Trials - Vaccine for Pd #


Vaccine for Parkinson’s Disease Enters Phase 1 Clinical Trial

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Katie Pratt

Brain Blogger - The word “vaccination” generally brings to mind the prevention of infectious disease. However, significant advances have recently been made in the field of therapeutic vaccination for the treatment of chronic human disorders including neurological conditions and cancer.

Simply put, a vaccine is a mixture of compounds (most often proteins) that are selected for their ability to activate the immune system. These compounds, also known as antigens, are then injected into the body where they prepare the immune system for a future assault. The result of such prophylactic vaccination is either complete immunity to the illness, or at least a significant reduction in disease severity.

While a prophylactic vaccine is administered as a preventative measure, therapeutic vaccines are intended to help fight a disease that has already taken root. For example, a therapeutic vaccine might be given to a patient with cancer in order to enlist the patient’s own immune system in the fight against the disease.

The problem with this kind of approach is ensuring that the antigen used in the vaccine does not induce an immune response against healthy parts of the body. Again, using cancer as an example, diseased cells often contain mutated proteins, or proteins that are not usually expressed in adult tissue (known as onco-fetal genes). This means that vaccines using these antigens specifically target cancer cells.

Recently, a therapeutic vaccine for Parkinson’s disease developed by Austrian pharmaceutical company Affiris entered a clinical trial, a landmark move in the management of a disease that is currently only treated at a symptomatic level.

Patients with Parkinson’s disease suffer from a number of debilitating symptoms that are the result of the loss of a particular class of neurons in the brain. These neurons are involved in the control of muscle function and are particularly sensitive to the neurotransmitter dopamine. It is for this reason that current treatments revolve around modulation of the levels of this chemical.

The underlying molecular cause of the disease is a protein called alpha-synuclein. Ordinarily this protein is found throughout the neocortex, hippocampus, thalamus, substantia nigra, and cerebellum, although its precise function remains unknown. Importantly, this protein is very unusual in that it does not fold up like the majority of proteins. Its “floppy”, unfolded appearance means that it is particularly susceptible to getting tangled up and forming protein aggregates within brain cells, thus sentencing the affected cell to death. The formation of protein aggregates also underlies other brain disorders, including Alzheimer’s disease and Creutzfeld-Jacob disease.

It is the alpha-synuclein protein tangles that are targeted by the vaccine currently in trials, PD01A. The study, funded by the Michael J. Fox Foundation to the tune of $1.5 million, will assess the safety of the vaccine in both men and women with Parkinson’s disease, with the results expected in July of 2014.

Given the prevalence of protein aggregates in brain diseases, therapeutic vaccination might therefore represent a promising future treatment for several neurological conditions.


Walking - Take a Walk in the Park #


Take a Walk in The Park


Walking improves stamina, energy, heart health, strength, and balance. As a form of exercise walking may even alter the physical and brain changes that occur with Parkinson’s over time.  Walking can also help the mind and the soul.   Research tells us that exercise including simply just walking, can protect our thinking abilities as we get older and protect from disease…

·        Reduce cognitive decline that can happen with aging

·        Reduce the risk of developing Alzheimer’s disease a form of dementia that attacks memory and thinking skills

·        Reduce the decline executive function in Parkinson’s.  (Learn more about executive function.)

Walking can also be good for our emotions and our soul. We have long known that exercise can help our mood and treat depression.  A walk in the park is like getting a double dose of therapy.

John Muir, a naturalist and nature lover once wrote,

In every walk with nature one receives far more than he seeks.”

In a time when many of us are flocking to gyms, joining exercise classes or getting on the treadmill to get in ‘their exercise’, we may be missing an opportunity to move and feel well. Researchers evaluating the effect of walking on our mood showed that a walk in the park improved mood more than a similar walk in the shopping mall.  Our environment affects how we feel, think, move and behave.   Think about a walk in the park on a beautiful sunny day and the feeling and experience that comes to mind

·        The fresh air sharpens the senses and clears the mind of clutter

·        The marvel and good natured fun of watching nature

·        The stress dissolving effect of the peaceful calm of a gentle breeze

·        The sense of hope and anticipation that comes with the first spring buds.

·        The reflection of days past and what brings joy to us in life as we watch the sun set

·        The challenge and sure footedness of walking that is gained from walking on uneven ground

·        The chance to slow down, share your walk and connect with a loved one

·        The energizing feel of the sun

·        The joy and reminder that little things like a bird’s song or child’s laughter are important in life

·        The soothing effect of the sun’s warmth on our back

The benefits of nature are available to us all.  The power of exercise in Parkinson’s, healthy aging and emotional wellbeing are undisputed. Enhance this power by taking your next exercise activity outdoors.  Whether you take a stroll in your wheelchair in the park, take a walk around the block or a short stroll in your backyard, the benefit of nature is priceless.

Author: Monique Giroux, MD 


Copyright 2013 Northwest Parkinson's Foundation Wellness Center


Therapy - Nature as Therapy


Nature as Therapy


We’ve long known that connecting with nature has a powerful influence over us.  Studies evaluating the effect of nature on healing show that this effect is real and not just imagined.  Using nature videos, artwork and exposure to the outdoors, researchers show that recovery from surgery is faster, the length of hospital stays are reduced and the healing process is enhanced.   Natural spaces stimulated creativity, engagement, and problem solving yet at the same time add a sense of peacefulness and calm.  Nature gives us a respect for our interconnectedness, adds meaning and purpose to life.  Hospitals, hospice programs and healing arts practitioners now intentionally add nature to their décor and environment to enhance personal healing.

Nature therapy is a growing field of professionals in the healing arts that are using the sights sounds and touch of nature in their programs.  Follow these simple tips to bring the outdoors into work and living space

        Add colorful flowers and plants especially during the grey winter months

        Use the soothing sounds of nature to help you fall asleep or help you fight stress

        Fill your walls with artwork that depicts nature scenes and memories

        Create that outdoor get away to get lost in nature. It doesn’t have to be an elaborate deck or patio.  A well placed chair outside may be all you need.

        Enjoy the benefits of a small fish tank, potted fern or bird feeder.

        Use stone, wood and shells as centerpieces or accents in your home rather than commercially bought items.

        Collect items such as rocks or leaves on your trips as both a reminder and way to bring your experience home.

Copyright 2013 Northwest Parkinson's Foundation Wellness Center




Therapy - Stem Cell Research


International Stem Cell Reports Parkinson's Research Advance Stem-Cell Therapy Aimed at Parkinson's Promising

Copied from The Northwest Parkinson’s Foundation weekly News Update


Animals trials by Carlsbad company show progress

Bradley Fikes - Signs of Parkinson’s disease have been relieved in a small animal study conducted by Carlsbad-based International Stem Cell Corp., which is developing its own kind of stem-cell therapy for various diseases.


The study used rats and monkeys to test the therapy’s ability to replace the kind of brain cells destroyed in Parkinson’s and relieve the disease’s movement disorders. The animals were given a neurotoxin to induce Parkinson’s symptoms. Rats showed improved movement, and the monkeys produced higher levels of dopamine, a neurotransmitter essential for movement.


Study results will be presented today at the annual meeting of the American Academy of Neurology at the San Diego Convention Center.


The results indicate the approach is worth pursuing, said study co-author Evan Snyder, who heads the stem-cell and regenerative biology program at Sanford-Burnham Medical Research Institute.


“Being able to show that the cells are there, and that they’re safe, certainly is the first step,” before human testing, Snyder said. “One needs to do monkeys before you can have a treatment.”


Carlsbad-based International Stem Cell is researching therapy with parthenogenetic stem cells, which are made from unfertilized human egg cells. The company says parthenogenetic stem cells present a less questionable approach to stem-cell therapy than using human embryonic stem cells, which are taken from human embryos. The company says parthenogenetic-derived cells are also less likely be rejected by the immune system.


Researchers transplanted the newly produced human brain cells into rats and African green monkeys. Months after treatment, the treated rats moved more normally, and the treated monkeys produced more dopamine. Controls were used in both groups. A total of eight green monkeys were used in the study. Four monkeys were treated, two given a sham treatment and two not given any treatment.


A related study published Friday, in which Snyder was also involved, provided evidence of a more-efficient way of turning human parthenogenetic stem cells into dopamine-producing neurons.


Researchers led by Jeanne Loring at The Scripps Research Institute in La Jolla are pursuing a similar treatment. Loring and colleagues are using induced pluripotent stem cells, artificially produced stem cells that also act like embryonic stem cells. These IPS cells can be produced from skin cells, making it possible to grow the cells directly from patients to be treated. (619) 293-1020 Twitter: sandiegoscience


Therapy - Hope for Parkinson's Patients


Hope for Parkinson’s patients

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Tim Freed

Winter Park Observer - Until eight months ago, Robert McRainey had never been cycling in his life. The bike that he bought 25 years ago had remained untouched, and was beginning to collect dust in the garage of his Casselberry home.

Today, McRainey finds himself on a bike at least three times a week, taking a spinning class and riding outdoors whenever he can. While some cyclists take classes to improve their endurance or lose weight, McRainey and the 20 other participants in his spinning class are after something else: a better quality of life with Parkinson’s disease.

Cyclist Roy Roden came to the Crosby YMCA Wellness Center in Winter Park last Wednesday to share the story of his 4,500 mile ride across the U.S. with Parkinson’s disease, an inspiration to McRainey and the other members of the center’s Pedaling for Parkinson’s Program – a stationary cycling class founded on research showing a reduction in symptoms by pedaling a bicycle.

After receiving the surgery for Deep Brain Stimulation (DBS), an electronic device that enables the brain to control movement better, Roden set off on his journey with his wife Lynn from Seattle, Wash., in November. Three months later they arrived in Florida, making a stop in Orlando to speak at the Crosby YMCA before arriving at his final destination in Miami.

“It’s awe-inspiring to see him get his life back, do the DBS and let everybody know that the DBS is working. It’s an option that people should look at,” said McRainey, who was diagnosed with Parkinson’s two years ago. “With him pedaling across the U.S. like that, we would never think that we could do something like that, and the fact that he’s doing it just gives us something to shoot for. Maybe not at quite that level, but we have the ability; all we have to do is go for it.”

As Roden continues his journey toward Miami and a better life with Parkinson’s disease, the members of the Pedaling for Parkinson’s Program continue on their own journey as well, gaining small victories every time they sit on the bike.

“I see people come in and they can hardly get on the bike,” said Howie Apple, a Parkinson’s patient and co-instructor of the spinning class. “By doing it enough times, they develop the skills to even get on the bike.”

“If you get on the bike and do five minutes and then get off, the important thing is to come back. The real issue is to start people off where they are and to improve from there with their own baseline.”

The Pedaling for Parkinson’s program began in 2012 when Apple found research conducted by the Cleveland Clinic showing that up to 35 percent of symptoms were reduced when Parkinson’s patients rode a bicycle, optimally at a rate of 80 to 90 revolutions per minute. Apple approached the Crosby YMCA about a program, and in June of that year, the first group of members began the classes.

McRainey has started to see success with his own symptoms. Before the cycling classes, he often felt fatigued due to his medication, and was forced to take three naps every day. After eight months of classes though, he has now gone down to only one nap every other day. McRainey also mentioned that his depression, a common symptom of Parkinson’s disease, too has dwindled.

“I think it’s amazing. I think everyone is entitled to have the best quality of life that’s available to them so they can be more active in the community,” said Brittany Dixson, the medical fitness coordinator for the Crosby YMCA Wellness Center. “The fact the research backs up what they’re doing is even better. The research already shows that there’s going to be benefits to this, so if they keep going for it, they can hopefully reap all of the benefits that this cycling class will give them.”

Apple, his wife Debbie and co-instructor Terri Callanan are currently monitoring the progress of the program’s members, and plan to submit statistics such as heart rate, time spent riding and average cadence to an institution to prove the effectiveness of cycling, and to show the improvement of the riders.

With the Pedaling for Parkinson’s Program at the Crosby Center being the only program of its kind in Central Florida, Apple also hopes that it will expand to other locations, giving more Parkinson’s patients an opportunity to come together against the disease.

“It means so much to face down the giant, the fact that you’re having to deal with this disease, which is degenerative as time goes on,” McRainey said. “A lot of people may want to give up.”

“The camaraderie by being involved with other folks that are facing the same problem, where you become a community in itself, is just amazing. It’s the difference between night and day as far as that goes.”



Therapy - Parkinson's Patients Live Large in a New Program


Parkinson’s patients live large in a new program

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Dierdre Cox Baker

quad-city - The ravages of Parkinson’s disease are described as making a person seem smaller.

The individual, probably an older man, grows hunched, speaks softly, and has difficulty walking and doing regular daily activities.

Identified in 1817 by British Dr. James Parkinson, the disorder has been studied for almost two full centuries. However, new therapies have been introduced because it is one of the most common neurological conditions in aging adults.

Parkinson’s is confirmed in about 1 million people each year, and the majority of them are male. The cause has been traced to low levels of the organic chemical dopamine in the brain, but it is not fully understood. There is no cure, and most patients are diagnosed after they turn 50 years old.

All of these realities help explain the excitement of Genesis Medical Center therapists involved in the LSVT outpatient program, which stands for Lee Silverman Voice Treatment. There are voice, occupational and physical therapists involved in the program, originally developed during the 1980s and named after an Arizona woman.

Genesis offers two aspects of LSVT: One is called “Loud” for the voice therapy aspect and one is called “Big” for the physical therapy.

A highly successful program

“With Parkinson’s disease, the people start to get small,” explained Barb Vanderlinden, a speech therapist. She then drew a picture of how the disease affects an individual. “Their speech gets small, they hunch over and look small, and they walk small. Every motion is decreased.”

Physical therapist Pat Glasgow agreed. “Often, as they become smaller and smaller, they still see themselves as normal. And what looks normal to us looks to them as huge,” she said.

The LSVT therapists try to teach — and preach — the concept of living big. They aim for patients to feel that “big” is a new normal level of life.

A month-long series of repeated exercises has paid off with visible success for every patient in the program, the four therapists agreed.

“I’ve never, ever really seen this program not work,” Glasgow said. “That’s exciting to me. We, and patients and their families, see improvements. It ranges from fairly good to dramatic changes in mobility.”

Dr. Ergun Uc, a neurologist, warns that treatments such as LSVT generally require a strong commitment, and compliance, from patients and caregivers and may not suit all who have Parkinson's disease. "For example, those would be the frail patients and those who have dementia," he said. Uc is a specialist in Parkinson's disease at the University of Iowa .He also works at the Veterans Administration Medical Center in Iowa City.

Patient says it works, too

As a young man, Ed Stolley of Bettendorf fought in the Vietnam War and was exposed to Agent Orange, a herbicide used to clear foliage in the jungles of Vietnam and later linked to several health issues in veterans of the Asian war. Stolley, 69, explained that his exposure led to a Parkinson’s disease diagnosis six years ago.

“It affects me quite a bit,” he said. For one thing, family members and friends have noticed that he speaks too softly.

But Stolley’s daughter is a nurse who learned about the LSVT program at Genesis and urged him to get involved.

He found it difficult to complete the therapy exercises, but he’s very thankful that he did. Stolley participated in two types of therapy at the same time, working on both on his voice and his movement. The regimen was complicated by recovery from a ruptured appendix and the mix of prescription medicines that he takes.

“I didn’t think I could make it. It can be a difficult program,” he said.

Improved approach from past

Past therapies for Parkinson’s were to treat patients where there were deficits, said Mickey Owens, an occupational therapist with the LSVT program. “It was kind of like one and done,” she added.

Owens works with patients on their daily activities such as bathing, dressing and living in the home.

The program has specific protocols and exercises, and it’s a lifelong process, said Susan Bode, a physical therapist.

“It’s unique because of the intensity and frequency. Both are modeled to change the movement patterns,” she said.

The therapists agreed that traditional programs ended in less-successful recovery rates. That led to their professional frustration and is why they sought out a programming change.

“We’ve had great success with this,” Bode said.

Stolley, the Parkinson’s patient, agreed.

“I’m glad I stuck it out. It was the best thing I’ve done,” he said, adding, “I would recommend this program to any person with Parkinson’s. I’m that happy about it.”


Therapy - Exercising Your Brain May Improve Your Life #


Exercising Your Brain May Improve Your Life

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Wynne Parry

Yahoo News - Throughout life, even shortly before death, the brain can remodel itself, responding to a person's experiences. This phenomenon, known as neuroplasticity, offers a powerful tool to improve well-being, experts say.

"We now have evidence that engaging in pure mental training can induce changes not just in the function of the brain, but in the brain's structure itself," Richard Davidson, a neuroscientist at the University of Wisconsin-Madison, told an audience at the New York Academy of Sciences on Thursday (Feb. 6) evening.

The brain's plasticity does change over time, Davidson pointed out. For instance, young children have an easier time learning a second language or a musical instrument, he said.

Exercise for the mind

The idea of training the brain is not a radical one, said Amishi Jha, a neuroscientist at the University Miami and another panelist for the discussion.

"How many of you think engaging in certain kinds of physical activity will change the way the body works? Our cultural understanding now is that specific types of activity can alter the body in noticeable ways," Jha said, adding that this cultural understanding may be shifting to incorporate the mind as well.

The panel discussion focused on a particular type of exercise: the practice of mindfulness, which panelist Jon Kabat-Zinn, a clinical mindfulness expert at the University of Massachusetts Medical School, defined as awareness.

"Mindfulness is awareness that arises from paying attention in the present moment, nonjudgmentally," Kabat-Zinn said.

Jha's personal interest in mindfulness arose from stress. As a young professor and mother under pressure from her job and family life, she ground her teeth so much that it caused numbness, interfering with her ability to speak. Jha attended a presentation Davidson gave and was startled to hear him say meditation, which cultivates mindfulness, could promote a positive pattern of electrical activity in the brain.

"I was like, 'I can't believe he used that word [meditation] in this auditorium,'" she said. "I had never heard it in a scientific context."

So, Jha began her own mindfulness practice, which not only reduced her stress level, but also inspired her to explore the topic as a neuroscientist.

Opening the door

There are many doors into mindfulness, said Kabat-Zinn. He gave two examples: A person can practice mindfulness by focusing on something, such as his or her own breath, and bringing his or her attention back to the breath when it begins to wander, Kabat-Zinn said.

It is also possible to practice awareness without choosing a particular object upon which to focus; however, "that turns out to be quite a challenging thing to do," he said.
Cultivating mindfulness like this can help break harmful cycles, such as those that accompany depression, in which the mind continues to repeat the same negative thoughts.

"When you see you are not your thoughts or your emotions, then you have a whole different palette of ways to be," Kabat-Zinn said.

Roots in the East

Many would say mindfulness as it is practiced in Western society has its roots in the East, in Buddhism, noted moderator Steve Paulsonof the public radio program "To the Best of Our Knowledge."

"Is mindfulness a spiritual practice?" Paulson asked the panelists.

"For me, I don't talk about spirituality, because I don't know what spiritual means," the University of Wisconsin's Davidson said. "I think what we're talking about is part of every human being's innate capacity."

Buddhist monks, whom Davidson has studied, provide a "sample of convenience," a group of people who have all received the same training, an important consideration for research, he said.

The neuroscience

Brain scans of meditating people show different patterns of activity depending on the practitioner's level of experience. These patterns also differ depending upon the type of meditation practice used, Davidson said. [Mind Games: 7 Reasons You Should Meditate]

Work in Davidson's lab indicates a connection between meditation and resilience. A response to stress becomes problematic when someone perseverates, or has an emotional reaction long after the problem has ended. In the brain, this shows up as the prolonged activation of a region known as the amygdala.

Mindfulness can increase the speed of recovery in the amygdala, and the more hours of formal practice people have, the faster their amygdalas recover, the data indicate, Davidson said.

This panel was the last of a four-part series on consciousness, moderated by public radio host Paulson and presented by the Nour Foundation.


Therapy - How Math Could Improve Life


How Math Could Improve Life for Nearly 6 Million With Parkinson's

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Max Little

Huffington Post - I'm a mathematician and am constantly amazed that the world around us can be described mathematically. All it takes is a combination of a handful of simple mathematical concepts. I'm insatiably curious, and I want to understand how things fit together, so, I get involved in many kinds of scientific problems -- everything from the changing statistics of extreme rainfall, to the behavior of life at the scale of molecules, to analyzing voice and speech recordings for forensics. But there's one project, on Parkinson's disease that has occupied me for the last seven years. I fell into it almost by accident.

It is estimated that between 4 and 6 million people worldwide have Parkinson's. Because the disease is more likely to affect older people than younger, and because the population is aging and growing, that figure is expected to rise. Parkinson's primarily affects movement, the 'classic' symptoms are uncontrollable and unwanted motion in the limbs, which looks like shaking or tremors.

I can only imagine what it is like to suffer from a neurological disease. But like so many of us, I have a friend who is affected: Jan Stripling, who used to be a virtuoso ballet dancer. I thought it particularly cruel for him to suffer from Parkinson's, having lived a life dedicated to the performance of the most elegant, controlled movements. But actually, he tells me that it is the little things we all take for granted -- such as buttoning a shirt -- that frustrate him most now.

What can I do to help? I'm not a health care professional -- so I can't help directly and I found this very frustrating. I was, however, fortunate enough to have met someone who was involved in a medical research project into Parkinson's, which had recorded the voices of around 50 people weekly. As it happens, although I don't know much about neurological disorders, I do know a lot about the voice and sound. In my PhD at Oxford, I had developed mathematical algorithms for detecting voice disorders, and when we tried these algorithms on Parkinson's voices, we were able to detect those with the disease, with around 86 percent accuracy.

So, for me, it was the chance discovery that voice is affected as much by Parkinson's as limb movements, that set me on the path of trying to detect and monitor Parkinson's using voice recordings. In collaboration with one of my students, I worked for several years and now have algorithms that, in the lab, reach around 99 percent accuracy in detecting the disease. We also know how to predict the severity of symptoms to within a few percentage points of clinical judgment.

Current symptom tests are done in a clinic. They are expensive, time-consuming, and logistically difficult. So mostly, these tests are not done outside clinical trials. Our technology could enable some radical breakthroughs, because voice-based tests can be administered remotely, and patients can do the tests themselves. Also, they are high speed, taking less than 30 seconds, and since they don't involve expert staff time, they are ultra low cost. That makes the technology massively scalable.

There are many areas of medical practice and research where we think this could have an impact -- for example, reducing the need to visit the clinic to find out how the disease is progressing. We could do high-frequency monitoring for individualized treatment decisions. This might allow clinicians to optimize drug timing and dosage. For clinical trials, we could do cost-effective mass recruitment for new treatments. By recruiting very large numbers into trials we could help speed up the search for a cure. And finally, this could enable population-scale screening programs, that might allow us to search for 'biomarkers' that show early signs of the disease before the damage done is irreparable.

Recently, we set up the Parkinson's Voice Initiative with the aim of collecting 10,000 voices from across the world, using the standard telephone network. We wanted to test the technology outside the lab. We had a massive public response, quickly reaching the target in just a few months.

This incredible and unique dataset will tell us whether it is possible to use something as ubiquitous as the telephone to detect and monitor the disease. This now becomes a 'big data' analysis problem, and until the analysis is done, we can't know for sure if it will work. But if it does, we would have the technology to check out some 75 percent of the world's population at a negligible cost.

This analysis problem is already raising many new mathematical challenges that require me to design new algorithms. And as always, I'm finding that these algorithms have uses outside Parkinson's and biomedicine. One particularly fascinating application is the detection of extrasolar planets -- that is, planets circling other stars.

One way to detect these planets is to monitor the brightness of the host star: when the planet passes through the line of sight, it dims slightly, and this dimming is very good evidence for the existence of planet. But the brightness signal is extremely noisy, so, removing the noise requires specialized mathematical algorithms. It turns out that these algorithms have a lot in common with those used to analyze voice signals in Parkinson's!

This is the pattern I find in my mathematical research: a particular problem requires a mathematical solution, and I find that I already have a useful algorithm in my 'algorithm toolbox.' The goal of my research, then, is to discover ways to adapt those mathematical tools to help solve new problems. This process has extraordinary depth and is always fascinating.

Ideas are not set in stone. When exposed to thoughtful people, they morph and adapt into their most potent form. TEDWeekends will highlight some of today's most intriguing ideas and allow them to develop in real time through your voice! Tweet #TEDWeekends to share your perspective or email tedweekends@huf to learn about future weekend's ideas to contribute as a writer.



Therapy - Vaccine for Parkinson's Disease Enters Phase 1 Clinical Trial


Vaccine for Parkinson’s Disease Enters Phase 1 Clinical Trial

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Katie Pratt

Brain Blogger - The word “vaccination” generally brings to mind the prevention of infectious disease. However, significant advances have recently been made in the field of therapeutic vaccination for the treatment of chronic human disorders including neurological conditions and cancer.

Simply put, a vaccine is a mixture of compounds (most often proteins) that are selected for their ability to activate the immune system. These compounds, also known as antigens, are then injected into the body where they prepare the immune system for a future assault. The result of such prophylactic vaccination is either complete immunity to the illness, or at least a significant reduction in disease severity.

While a prophylactic vaccine is administered as a preventative measure, therapeutic vaccines are intended to help fight a disease that has already taken root. For example, a therapeutic vaccine might be given to a patient with cancer in order to enlist the patient’s own immune system in the fight against the disease.

The problem with this kind of approach is ensuring that the antigen used in the vaccine does not induce an immune response against healthy parts of the body. Again, using cancer as an example, diseased cells often contain mutated proteins, or proteins that are not usually expressed in adult tissue (known as onco-fetal genes). This means that vaccines using these antigens specifically target cancer cells.

Recently, a therapeutic vaccine for Parkinson’s disease developed by Austrian pharmaceutical company Affiris entered a clinical trial, a landmark move in the management of a disease that is currently only treated at a symptomatic level.

Patients with Parkinson’s disease suffer from a number of debilitating symptoms that are the result of the loss of a particular class of neurons in the brain. These neurons are involved in the control of muscle function and are particularly sensitive to the neurotransmitter dopamine. It is for this reason that current treatments revolve around modulation of the levels of this chemical.

The underlying molecular cause of the disease is a protein called alpha-synuclein. Ordinarily this protein is found throughout the neocortex, hippocampus, thalamus, substantia nigra, and cerebellum, although its precise function remains unknown. Importantly, this protein is very unusual in that it does not fold up like the majority of proteins. Its “floppy”, unfolded appearance means that it is particularly susceptible to getting tangled up and forming protein aggregates within brain cells, thus sentencing the affected cell to death. The formation of protein aggregates also underlies other brain disorders, including Alzheimer’s disease and Creutzfeld-Jacob disease.

It is the alpha-synuclein protein tangles that are targeted by the vaccine currently in trials, PD01A. The study, funded by the Michael J. Fox Foundation to the tune of $1.5 million, will assess the safety of the vaccine in both men and women with Parkinson’s disease, with the results expected in July of 2014.

Given the prevalence of protein aggregates in brain diseases, therapeutic vaccination might therefore represent a promising future treatment for several neurological conditions.



Therapy - Rhythmic Beat May Help Parkinson's Rehab


Rhythmic beat may help Parkinson’s rehab

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Walking to an audible beat may be useful in rehabilitation for people with Parkinson’s disease and similar disorders, a study shows. - Researchers studied the effects of various metronomic stimuli (a mechanically produced beat) on fifteen healthy adults, ages 18 to 30. Walkers participated in two sessions consisting of five 15-minute trials in which the participants walked with different cues.

In the first, participants walked at their preferred walking speed. Then, in subsequent trials, participants were asked to walk to a metronomic beat, produced by way of visuals, sound, or touch. Finally, participants were asked to walk with all three cues simultaneously, the pace of which was set to that of the first trial.

“We found that the auditory cue had the greatest influence on human gait, while the visual cues had no significant effect whatsoever,” says Ervin Sejdic, an assistant professor of engineering at the University of Pittsburgh, who reports findings in the journal PLoS One.

“This finding could be particularly helpful for patients with Parkinson’s disease, for example, as auditory cues work very well in their rehabilitation.”

With illnesses like Parkinson’s disease—a brain disorder leading to shaking (tremors) and difficulty walking—a big question is whether researchers can better understand the changes that come with deterioration.

“Oftentimes, a patient with Parkinson’s disease comes in for an exam, completes a gait assessment in the laboratory, and everything is great,” says Sejdic. “But then, the person leaves and falls down. Why? Because a laboratory is a strictly controlled environment. It’s flat, has few obstacles, and there aren’t any cues (like sound) around us.

“When we’re walking around our neighborhoods, however, there are sidewalks, as well as streetlights and people honking car horns: you have to process all of this information together. We are trying to create that real-life space in the laboratory.”

In the future, Sejdic and his team would like to conduct similar walking trials with patients with Parkinson’s disease, to observe whether their gait is more or less stable.

“Can we see the same trends that we observed in healthy people?” he says. “And, if we observe the same trends, then that would have direct connotations to rehabilitation processes.”

The team feels that visual cues could be considered as an alternative modality in rehabilitation and should be further explored in the laboratory. Additionally, they plan to explore the impact of music on runners and walkers.

Funding for this project was provided, in part, by the University of Pittsburgh, the University of Toronto, and Holland Bloorview Kids Rehabilitation Hospital.


Therapy - Sexually Alive with Parkinson's Disease #


Sexually alive with Parkinson’s Disease – A new perspective on sexuality


1.      A new perspective on sexuality:  An ongoing journey

We are born sexual beings and we die sexual beings. What keeps on changing throughout our lives, is how we speak, express, enjoy, hate, develop, stunt, grow, and adapt our sexuality throughout our lives.

Nelson has said about sexuality:

“We are being called and given permission to become body words of love.”(1)

This statement fills me with hope: It helps me to realise that in spite of the worst possible scenario, our bodies and our being can still be vehicles of love, closeness, tenderness and passion. We can choose to adapt and change our journey although we are different.

 I have been privileged to experience this with my husband in our marriage of 31 years, his journey with Parkinson’s disease, and even more, sitting with patients who had to go through:

 A spinal cord injury and adjust to new ways of caressing because of his paraplegia;

A stroke that robbed the ability to walk and talk but touching with one hand remained as well as the ability to relax when the healthy side of the body was caressed;

The woman with the second mastectomy whose husband had to nurse her wound and his own anxieties and after her death, give himself permission to enjoy a new relationship after years;

the patient who struggled with ED after his radical prostatectomy and hormone treatment and decided not to take medication for ED, because their relationship has stabilised on a limited level of intimacy after her chemotherapy; for him adapting in their sexual relationship was accepting that he could still be healthy, exercise and masturbate when needed.

Others with extra-marital affairs, sexual abuse, MND, amputation, grief, depression, bipolar mood disorder, Premature ejaculation, ED, Vaginismus, Lack of desire, Anorgasmia. Everyone of these patients made their individual decisions to adapt/ not, to use medication and counselling/ or not in moving on in their lives.

In moving on, we need to remind ourselves of some basic facts:

Our biggest sex organ

Our biggest sex organ is our skin. Laura Berman reminds us:

”The right touch can be as intimate and erotic as sex itself”(2)

 But to allow our erotic minds to stay alive, we need to get our most important sex organ, our brain, on our sides.

Our most important sex organ is our brain:

Parkinson’s disease is the result of Substantia Nigra Cells that stopped producing Dopamine, leading to the motor and non-motor symptoms. But the rest of the brain is  still working and can help one to adjust.

Understanding and discussing the illness, accepting it and and it’s effect on sexuality, is part of accepting and moving on. It leaves one with more choices, especially if normal functioning, sexual responses and differences between men and women as well as the effect of ageing on sexual responses are taken into consideration.


2.Sexual functioning

Sexual functioning depends on the neurological, vascular and endocrine systems allowing sufficient blood supply to and from genital organs, a balanced hormonal system and a healthy emotional state. Sexual functioning is influenced by psychosocial factors, family and religious background, the sexual partner and individual factors such as self-concept and self-esteem. Sexuality can be changed by aging, life experiences (e.g. abuse) and various illnesses and their treatments.(3) (Verschuren, et al,2010)

Sexual response

 Sexual response has identifiable stages – desire, arousal, climax, and resolution which are accompanied by bodily changes.

Desire  occurs when we see, smell, hear or experience emotions that trigger sexual energy and sexual potential is awakened.(4)Loving sex

During sexual arousal the heart rate quickens, cheeks flush and pupils dilate.

 A woman’s nipples become erect and blood flow to the genitals increase. In the woman the vagina becomes moist (vaginal lubrication), the clitoris ( which is 10-12 cm in length) fill with blood. The speed of response by the clitoris depends on whether it is stimulated directly by touch, fingers, mouth or erect penis or indirectly by touching of other erogenous zones.

Because of its position, the clitoris is not stimulated directly during intercourse, so movements of the penis on its own are often insufficient to excite the clitoris to orgasm.  Additional touch by fingers or mouth (masturbation by the partner or self) may be necessary to reach orgasm.

As sexual excitement increases the vagina lengthens and distends and the colour of the vulva change from pink to dark purple. During orgasm the vagina and  uterus  contracts 3-15 contractions at 0.8 second intervals. Women may have multiple orgasms or experience arousal without achieving an orgasm. After orgasm, the body relaxes and the vagina and clitoris return to normal, resolution.(4)Magic of sex

A man’s response to sex starts in the brain when he is aroused by something real or imagined. (predominantly visual stimulation or conditioned experiences).

The penis becomes erect and internal and external body changes occur. A “sex flush” that may appear over his abdomen, chest, neck and face, nipple swelling and increased heart rate, breathing rate and blood pressure. A feeling of “inevitability” is experienced two to three seconds before ejaculation and a drop of fluid may form at the urethral opening of the penis prior to ejaculation.(secretions from Cowper’s gland)

Orgasm occurs with simultaneous muscle contractions and rhythmic contractions of the penis and ejaculation. Orgasm and ejaculation are two separate processes and may, or may not occur at the same time. One can occur without the other.

During resolution , the penis becomes flaccid following intercourse and the man will not get another erection for some while.

3. Ageing and sexuality

The majority of older people still find sex thrilling and energy –giving; neither heir desires or capabilities vanish. Sex may wane a little in frequency and vigour, but not in sweetness and satisfaction.(4)

In both sexes, the sexual impulse declines with age but the general pattern differs in men and women. A man’s sex drive reaches a peak in late teens and thereafter gradually diminishes. A woman’s sexual feeling reaches a maximum much later in adult life, is sustained on a plateau of responsiveness which tends to decline in her late 60s. Much research support the existence of a strong sexual urge in 70- and 80-year old women and men.(4)

Goodwill, caring, thoughtfulness, a desire to comfort and shared intimacy keep long term relationships alive and mutual respect and affection help couples to remain close.(4)


Sex and the older man 

Until about the age of 50, men’s sexual responses stay stable. This is due to the testosterone levels remaining consistent through to his midlife.

Changing in sexual activity need open honest discussion to maintain a loving relationship.

·         Desire levels drop according to testosterone levels

·         Arousal changes – erections become more unreliable, erectile dysfunction more common; 40% chance of ED over the age of 40, 50% if over 50. ( MMAS; Feldman et al)

·         Orgasms are less intense and frequent.

·         Orgasms are prolonged.

·         Orgasms may happen without ejaculation

·         He may need days rather than hours before he is ready for intercourse. The resolution phase prolongs (5)

Coping with the changes, may need more active involvement from the partner. Changing the emphasis of sexual activity to longer and stronger foreplay, more tactile stimulation including caressing, rubbing, cuddling and the use of different sexual positions. The partner becoming more active as initiator.

Erectile dysfunction may be the indicator of other health issues, especially endothelial dysfunction, causing cardiovascular disease.  Medical evaluation to rule out underlying cardiovascular disease, DM, Testosterone deficiency or a neurological disease is crucial.(5 )

Sex and the older woman

Studies show that women have a more stable sex drive than men. Women over sixty-five continue to seek out, and respond to, erotic encounters, have erotic dreams, and continue to be capable of orgasms, even multiple ones. (5)

She can however expect the following sexual- response changes:

·         Decreased desire

·         Arousal takes longer because vaginal blood flow and genital engorgement are reduced; vaginal lubrication  is delayed and reduced in quantity.

·         Reaching an orgasm takes longer due to a decrease in vaso-congestion of the clitoris and vagina, as well as decreased sensitivity.

·         Decrease of breast and nipple erection.

·         Orgasmic capacity is retained- even multiple orgasms are still possible.

·         The number and intensity of vaginal contractions is reduced.(5)

The availability of a partner and the opportunity for regular sexual activity are the most important factors influencing sexual behaviour. Masturbation  is instrumental in keeping alive an older woman’s sexuality and sexual identity, and it will keep her physiological responses in good working order (especially during widowhood).(4)

Managing  changed sexual response may need more use of fantasy, openness about the kind of sexual touches that turns on and using additional lubrication or vaginal hormonal cream to prevent painful penetration and using hormonal replacement.

Use leisure time for leisurely sex, give more attention to foreplay and introduce something new like oral sex, sex toys, masturbation, new positions to increase arousal and desire.(5)

A satisfying relationship is crucial to enhance sexual responses.


4. Sexual dysfunction

Sexual dysfunction is not uncommon in the general population. It is linked to risk factors such as age, smoking, DM, CVD, other chronic diseases, menopause and ageing in the

male. It is multifactorial in chronic, neurological disease.

Sexual dysfunction in Parkinson’s Disease

Sexual dysfunction  is common in PD and associated with depression and relationship dissatisfaction.

Women: 75% difficulties with arousal &orgasm

                 50% low sexual desire

Men:        70% erectile difficulties

                 40% premature ejaculation

                 40% delayed orgasm (6)

In the general population without health problems, estimates of sexual problems vary from 10-52% of men and 25-63% of women.(7)





5. Sexual function is interfered with by typical PD symptoms 

1.  Muscle rigidity, bradykinesia and  clumsiness in fine motor control affect the ability  to  undress, touch and caress and indirectly the willingness to initiate. The slowness of movement , tremor or rigidity may interfere with practicalities of lovemaking.


*      Undressing your partner with PD can become a necessary but also playful part of foreplay.

*      A hot bath or shower before lovemaking, may lessen muscle stiffness and tiredness.

*      Changing roles: the woman becoming the more active initiator if the man has PD

*      The man spending more time to make his female partner with PD feel safe before caressing and touching.”Studies suggest that feeling safe may be the most important factor in determining whether or not a woman reaches orgasm.”(2)


2.  Sexual functioning may be worse in late evenings, especially with daytime     scheduling of medication.

*      Rescheduling night time lovemaking to mornings  could overcome this problem.

*      If you do feel sexual attraction, even if it is at a bad time for medication, follow your desire. Additional lubrication, or extra stimulation with a vibrator may surprise both of you.


           3.    PD medication can lower sexual desire or can enhance desire.

*      It is more often the associated depression, fatigue associated with PD or  relationship strain that cause a lack of libido.

*      Increase in desire may occur with levodopa and deep brain stimulation.



            4.   Tremor , dyskinesias can be enhanced during sexual arousal.

*      Accepting this as a compliment  rather than a “put off” may bring some humour and a change in attitude.

*       Switching your side of the bed, may enable touching and caressing with “the              better side”.

*      Use positions that will lessen the strain on stiff muscles (side by side)


                 5.  Hypersalivation and sweating

*      Has never been a turn on!!! Shower/ brush your teeth/ suck a sweet.


6. The mask–like face may reduce the appeal for the partner. Subjectively it                    influence the self–image of the partner in a negative way.

*      Deliberately practise open eye kissing, smiling while you caress.

*      Try to look into your partner’s eyes while you have an orgasm.


                7. Men can have problems getting and keeping an erection.

Causes: lack of dopamine/ anti-depressants/performance anxiety/ other physical causes.


               8. Treatment of ED:

*      Sildenafil  85% efficacy in PD patients with depression

*      Tadalafil & Vardenafil are also effective.

*      It enhance the response to sexual stimulation. The partner remains crucial.

*      Sildenafil should be taken 1 hour before intended sexual activity.

*      Often the larger dose needs to be used.

*      A longer time of onset is needed because of slowed gastrointestinal mobility.

*      It can be used once / twice per week.


             9. Contra –indications for PDE5I

*         Nitrates

*         Retinitis pigmentosa

*         History of priapism (prolonged erection)

*         Hypotension

*         Coronary artery disease




10.  Non-responders to oral treatment

*      Intrapenile injections of Alprostadil

*      Taught under medical supervision

*      Vacuum-device : rarely adopted by elderly

*      Difficulty placing / removing bands, bruises


11.  Ejaculation problems with PD

*      Rapid ejaculation: SSRI like Sertraline/ Paroxetine

*      Rapid ejaculation linked to ED: Sildenafil may help both


*      Delayed ejaculation: ejaculation is a reflex

*      Increased stimulation with a vibrator

*      Share this information with the partner

*      Decrease marital tension , embarrassment


12.  Women may experience vaginal dryness

*      Use additional lubrication to prevent pain with penetration.

*      Give more caressing/ foreplay.

*      Use a vibrator for clitoral stimulation to ensure an orgasm.


13.  Women may struggle with urinary urgency and incontinence

*      Empty the bladder before lovemaking


14.  PD symptoms worsen at night / sleeping apart reduces opportunities for spontaneous sex

*      Talk frankly and openly about sexual needs. Communication is the best remedy for all relationship problems.

*      Consider outercourse if intercourse is not an option.


          15.   Depression and the use of anti-depressants  in PD are common.

*      Both are associated with higher frequency of Sexual dysfunction.

*      PDE5I are recommended for arousal problems( ED or lack of lubrication)


16.  High prevalence of Testosterone deficiency in elderly PD patients

*      20-25% of males over 60 years

*      Depression, fatigue, decreased libido, ED, decreased work performance

*      Respond to testosterone treatment.

*      Motor and non-motor symptoms of PD improved with daily transdermal T-patch.


17.  Hypersexuality in PD

*      Rare side-effect of Dopamine agonists, Levodopa, Deep brain stimulation.

*      Discuss adjustment of dosage / medication with your neurologist.


18.  Issues for the person who has PD

*      Besides the effect of the condition and the medications, sexual problems may develop because of a negative body image, reduced self-esteem, depression and grief, anger and stress.

*      Open communication and understanding are

Therapy - Building Brain Muscles #


Building brain muscles - even with Parkinson's

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Michael ROizen,M.D. and Mehmet Oz M.D. - As Green Bay Packers' coach Vince Lombardi once said: "Practice doesn't make perfect. Perfect practice makes perfect." Today, neurologists can explain exactly what the coach was on to.

When you practice learning something new -- playing the piano, dribbling a basketball or using your computer mouse with your opposite hand -- you're building new neural pathways in your brain. The more intense the practice, the stronger and more functional those neural pathways, and the better you can play the piano or the more likely you are to make a three-pointer with your non-dominant hand.

Fortunately, old dogs CAN learn new tricks, and as you get older your brain can continue to build new pathways and get stronger, even if it's at a slower pace than when you were a kid. To make sure your brain stays toned and ready to fire, the thought for the day? AEROBICS. You can protect prefrontal and temporal gray matter volume and forge new neural pathways with daily activity. (Our suggestion for all ages: walking -- 100 steps a minute for 10 to 15 minutes; then 2.5 minutes of intense walking -- 130 steps a minute. Repeat at least once sometime during your day.)

Happily, this brain-building technique also can help folks who develop a neurodegenerative disease like Parkinson's, in which old pathways are lost and new ones are hard to develop. At Dr. Mike's Cleveland Clinic Wellness Institute, intense exercise improves symptoms for more than 30 percent of people with Parkinson's.

Now, can you remember how to get to Carnegie Hall? Practice, practice, practice.


Therapy - Art Provides Relief to Parkinson's Patient


Art provides relief to Parkinson's patient

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Doctors say exercising brain can benefit people like Harford County artist
Andrea Walker

The Baltimore Sun - Sometimes it's easy for Vincent Vono to feel down about having to live with Parkinson's disease.

The disease has snatched his independence and sense of a normal life. The 76-year-old stopped driving last year as his motor skills slowed. He doesn't cook much because it is too exhausting to clean up afterward. Even a short walk across his tiny apartment is a task some days.

But for all the disease has taken away from Vono, it has fostered and strengthened a love for art that first developed when he was a boy.

Painting is the one thing that still comes easily to Vono. When he sets his easel up in his living room, Vono can paint for hours. As he paints portraits of his grandchildren or of the madonna and child, his tremors subside and for a moment he forgets he is sick.

"It fills the gap," he said. "It erases all of the garbage out of my head."

As in all Parkinson's patients, Vono's brain no longer effectively produces the chemical dopamine, which helps control muscle movement. Without dopamine, his brain cannot send messages to his arms, hands, legs or feet.

Sometimes his body seems to have a mind of its own. His hands or feet will move in some direction he doesn't intend. Then there are the tremors. They change in intensity depending on his mood — growing stronger when he's anxious, angry or excited.

"It knows my emotions," he said.

Vono started to detect something was wrong in 2007. He had just moved to Maryland to be close to his son. He was still mourning the death of his wife, whose life was taken by a brain tumor the year before.

The tremors started gradually on the left side of his body. As he drove, his hand would shake. He'd hold his hand very tight and still to make it stop. Then his foot would "start doing a dance," he said.

When the doctor arrived at the Parkinson's diagnosis, Vono was scared, confused and angry all at the same time.

His functions have deteriorated since the initial diagnosis. While medication to replace his body's dopamine helps with some of the symptoms, nothing can ultimately stop the disease from taking over his body.

A couple of years ago, Vono reached a point where he couldn't care for himself. He wasn't taking his medicine regularly or eating healthfully. He moved into the Four Seasons assisted-living home in Bel Air.

Looking to achieve some normality in his life, Vono set up his easel on the balcony. He would sit outside for hours painting landscapes or pieces with science-fiction themes, such as tablecloths floating in the air.

The owner of the Four Seasons, Roger Stanley, immediately noticed his new resident's talents. He displayed Vono's work in a common area of the home.

Stanley also saw how painting helped Vono deal with his illness.

"He became completely still when he painted, and he could focus on the painting," Stanley said. "And the tremors would just stop."

Dr. Liana Rosenthal, a Johns Hopkins doctor who specializes in neurological disorders, said exercising the brain can help patients with disorders like Parkinson's cope with the disease.

It's not exactly known what happens in the brain, but keeping it active helps improve motor skills, said Rosenthal, an instructor in the neurology department at the Hopkins School of Medicine.

Rosenthal said that for Vono, painting has probably become an informal form of physical therapy. Doing something he likes also helps his mood, she said.

"He is also doing an activity that he enjoys and spending time not thinking about his disease and not being sick," Rosenthal said. "We always encourage patients to find an activity that they enjoy and do it. Staying active is one of the best things people with Parkinson's can do."

Vono's love for art spans years. He went to an industrial-arts high school in Brooklyn as a teenager and was an illustrator for the Army during the Cold War.

But he ultimately pursued a career in advertising, practicing his art as a hobby. He worked his way up in the pharmaceutical advertising world, eventually becoming an art director.

"I wanted a paycheck," he said.

Throughout the years, he would take art classes on the weekends and find solace in painting as he and his wife raised a family. If he had it to do all over again, Novo said, he might pursue a career in art instead of advertising.

He takes art classes twice a week at the local community college. A friend picks him up for class. His work recently placed in an arts and crafts show. Vono is thinking of trying to sell some of his pieces one day.

Vono's first love has now become the center of his life. Because of financial reasons, he recently moved from assisted living into his own apartment in Abingdon. But his easel sits in his living room in front of large windows with plenty of sunlight.

"It's perfect for painting," he said


Therapy - Can You Ride a Bicycle? #


Can you ride a bike? Then you're a marvel

Copied from The Northwest Parkinson’s Foundation Weekly News Update


A runner-up in the Wellcome science writing prize considers the extraordinary human ability to cycle
Catherine Hess - Most of us remember our first proper bike. It's a rite of passage, symbolising our transition from "little" to "big" kid. Even more exhilarating is the day we take our first ride without stabilisers. What most of us don't realise is just how complex the art of riding a bicycle actually is. So complex, in fact, that researchers are just beginning to investigate how on earth we manage to propel ourselves, constantly rocking back and forth with the movement of our legs, on two skinny wheels; simultaneously navigating movement in multiple planes while trying to avoid countless obstacles.

Most extraordinary is what the act of riding a bicycle can tell us about the human brain. In 2010 researchers from the Netherlands published a dramatic case study in the New England Journal of Medicine. Medical researchers at Radboud University in Nijmegen examined patients afflicted with Parkinson's disease, a neurological disorder that results in tremors and involuntary muscle movements. In severe cases, Parkinson's affects balance, co-ordination and limb control and can leave patients unable to walk or carry out basic tasks.

One such patient, a 58-year-old man, suffered from what researchers call "gait freezing". He was incapable of walking to the extent that he required visual guides to help him move one foot in front of the other and was unable to turn while walking. After a few steps the patient would lose his balance and would require his wheelchair.

Astonishingly, however, this patient could still ride his bicycle. Flawlessly. Video evidence, submitted with the published case study (and now available on YouTube), shows the patient, with severe tremors in his arms, shuffling slowly and unsurely down a hallway while being guided by another individual. After several steps he begins to stumble forward until he falls to the ground.

In a second video he is seen riding a bicycle with perfect movement and balance, the marked tremors in his arms are gone and he pedals at a consistent pace and with perfect balance and co-ordination. He cycles away from the camera, turns around and cycles back, slowing, stopping and dismounting perfectly. Once dismounted, however, he is again incapable of walking.

This phenomenon is called kinesia paradoxica. While the mechanisms involved are still not understood, the knowledge is invaluable. It may lead to new forms of physical therapy and exercise for people with Parkinson's disease or other neurological disorders that affect movement, co-ordination or balance.

Currently, the "bicycle sign" is being suggested as an effective and inexpensive way to differentiate between Parkinson's and the rarer atypical Parkinson's. One way in which the two diseases differ is in the ability or loss of ability to ride a bicycle. Individuals with Parkinson's who were able to ride a bicycle before the onset of symptoms retain the ability to cycle. Those with atypical Parkinson's do not.

But how is it possible for a man to ride a bicycle when he is essentially wheelchair-bound? More importantly, how does anyone adapt to the sensory whirlwind that is bicycle riding? Research teams at the University of California, Davis in America and the University of Delft, Netherlands, are trying to find out. What they have discovered is surprising.

While we take it for granted that riding a bicycle is as easy as, well, riding a bicycle, it turns out that it is anything but. Led by Professors Mont Hubbard and Ron Hess, American researchers are attempting to model human-bicycle interactions in a similar manner to pilot-aeroplane or motorist-car interactions. However, there are many more physical and neurological processes involved in riding a bicycle than driving a car.

Riding a bicycle involves continuous use of all the human's primary sensory capabilities, visual, vestibular [balance] and proprioceptive [the awareness of one's body and limb positioning]," says Hess. "The latter involves sensors in the arms providing information about steering inputs. What is more interesting though is the ability of the trained cyclist to ride a bicycle 'hands-free'."

Recent research at the University of California, Davis has demonstrated how subtle body leaning by the cyclist enables this behaviour.

"Imagine trying this control technique in an automobile or an airplane," says Hess.

The goal of this research is to understand how the cyclist interacts with both the environment and the bicycle and to develop bicycles that maximise performance, whether the rider is a Tour de France cyclist or a disabled cyclist needing greater stability or control.

What is clear from research into both the human brain and the bicycle is that despite the bicycle's simplicity we have yet to fully understand how it is that we manage to control it, and what is happening in the brain when we do. Our first wobbly bicycle ride, then, is a more remarkable event than we ever imagined


Therapy - How Pedal Power Could Ease Parkinson's #


How pedal power could ease Parkinson's: Cycling can improve connections in brain regions linked to the disease

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Scans revealed pedalling boosted connections between brain regions linked to movement
Fiona Macrae - Cycling could help ease the symptoms of Parkinson’s disease, scientists believe.

The exercise improved connections between brain regions linked to the disease and boosted patients’ co-ordination and balance, research has shown.

Exercising on a bike is ‘an effective, low-cost therapy for the disease’, one researcher said.

Some 120,000 Britons have Parkinson’s. Symptoms include tremors, speech problems and a gradual slowing down of the body.

As the disease progresses, speech and balance can be affected and some sufferers become wheelchair-bound.

High-profile patients include Michael J Fox, who was just 30 when he was diagnosed with the condition, and Muhammad Ali.

US neuroscientist Jay Alberts began the research after noticing improvements in his companion, a Parkinson’s patient, after a long-distance tandem ride across Iowa.

Dr Alberts, of the Cleveland Clinic Lerner Research Institute, Ohio, said: ‘The finding was serendipitous. I was pedalling faster, which forced her to pedal faster.

'She had improvements in her upper extremity function, so we started to look at the possible mechanism behind this improved function.’

In the study, he carried out a series of scans on the brains of 26 Parkinson’s patients who used exercise bikes three times a week for two months.

Some pedalled at their own pace, while others undertook ‘forced-rate’ cycling, in which they were made to pedal faster by motors fitted to their bikes.

The scans revealed pedalling, particularly vigorous pedalling, boosted connections between brain regions linked to movement, the annual meeting of the Radiological Society of North America in Chicago heard.

Researcher Chintan Shah, also from the Cleveland Clinic, said: ‘The results show that forced-rate bicycle exercise is an effective, low-cost therapy for Parkinson’s disease.’

The scientists are now studying how patients fare with exercise bikes in their homes. They also want to see whether other forms of exercise such as swimming and rowing have similar benefits.

The charity Parkinson’s UK welcomed the research, saying the balance and co-ordination can be badly damaged as the disease progresses.

However, it also cautioned that not all patients will be capable of exercising intensely.

Dr Kieran Breen, the charity’s director of research, said: ‘While it is too soon to encourage people with Parkinson’s to get on their bikes three times a week on the basis of this study, we do know that exercise can be beneficial.

‘A regular exercise routine can help those with the condition to not only improve their general fitness but can also help to improve movement and balance as well as other symptoms of the condition such as anxiety and depression.’


Therapy - Michael Berardi's Musical Journey


Michael Berardi’s musical journey

Copied from the Northwest Parkinson’s Foundation Weekly News Update


Ken Dreyfack

Woodstock Times - Two years ago, Burrill Crohn and a friend were in the midst of a conversation on Tinker Street when, as Crohn recalls, “this little guy, whose hands are shaking, who had been looking at us, came up and, stuttering, asked if we were talking about music. When we told him that yes, we were discussing the solo classical and jazz concert by pianist Warren Bernhardt that we had just attended, he asked to join the conversation. An hour later, after he had told me his story, it was as if a voice was speaking to me, telling me I’ve got to make a film about this guy. I had no money and no commercial intent. I started filming the next day.”

Woodstock resident Crohn, whose film credits include several award-winning documentaries about jazz made during the 1980s and 90s, discovered that ‘the little guy whose hands were shaking’ was Sangeeta Michael Berardi. A jazz guitarist who has played with many of the pioneers of ‘free jazz’ including Roswell Rudd, Archie Shepp, Alice Coltrane, Rashied Ali, Karl Berger, Eddie Gomez and Pharoah Sanders, Berardi has recorded under his own name and on the albums of many others. He has been described by trombonist Roswell Rudd as “the original cat with the cosmic fingers.” Now 73, Berardi has been suffering from Parkinson’s Disease for the past dozen years — an incurable degenerative disease that impairs movement and coordination, affects nearly one million Americans. What’s unusual about Berardi is that, rather than resign himself to his physical inability to play the guitar as before, he is integrating the disease into his music, to, in his words, “translate the unique rhythms of my Parkinson’s tremors into musical statements.”

Crohn’s film, Playing with Parkinson’s, aims to document Berardi’s startling approach and determination. The film, now ready for editing and sound mixing, centers around a two-day recording session at NRS Studios in Catskill in June of last year. Produced by pianist/composer John Esposito on his Sunjump Records label, the session was Berardi’s first in 15 years. Not coincidentally, Esposito had produced Berardi’s previous session and performed on it as well, as he did during last year’s two-day session.

“There’s something magical being in the studio,” Berardi recounted during a two-hour phone interview from his California home. “It was something that I’ve always loved. I had for a number of years thought it was lost forever. I recall a few years back talking with [drummer] Peter O’Brian and John Esposito and saying, ‘Man, one of the saddest things about this situation — I don’t dwell on that, I’m realistic — is that I’ll never be able to make music with you guys again. I had more or less accepted it was time to move on.’”

Although Crohn and Berardi had never met prior to their chance Tinker Street encounter, Berardi is no stranger to the Woodstock area, which he visits regularly. During the late 1960s and early 1970s, he was Music Director at Group 212, a local multimedia arts cooperative that included a theater group, painters, a rock and roll trio and dancers in both the folk and modern traditions. Before Berardi moved to San Francisco in 1972, he launched a weekly concert/workshop series on the SUNY New Paltz campus that included musicians ranging from blues master Eddie Kirkland to local saxophonist Eddie Xiques.

Originally, Esposito had thought that Berardi would be unwilling, and unable, to play for the June 2011 session, which would feature Berardi’s compositions performed by others. No one, including Berardi himself, had imagined how the one-time virtuoso guitarist, rather than fighting the symptoms of Parkinson’s, would actually integrate them into his playing.

“I got a used acoustic guitar and discovered that I could, in a more limited way, still make some good-time music,” Berardi explained. “Also, I started using my voice, which in a way goes way back, because when I was kid, I used to sing along with my solos.”

The result was a session during which Berardi not only played guitar but also percussion — building upon the stuttering tremors and rhythms of his disease — and sang. Here are the lyrics to Mr. P, one of the tunes he composed and performed for the session:

Mr. P you took my hands from me, my silver hands
That sailed the six-string seas (C’s?)
Most days you take my voice, but you left it today — ay-ay
So thank you, I’ll make music that way
Mr. P you stole my melodies and left rhythm behind-ind-ind
In every cruel game you play I’ll look for something kind
I spent nights and days asking why, why me
I can’t live like this, no please, I pray on bended knee
One night as I fell deep into my dark lament
I let it all go and felt a surge of strength
Why not me I heard through wide open ears
Why should it be someone else drowning in tears
A light came on inside my head, driving darkness away-ay-ay
A new me emerged inventing new ways to play
Next morning my shaking hands rang bells from a cereal bowl
Mr. P, not bad, I said, as bells continued to toll
Without struggle strange rhythms rang and rolled from the bowl
Without struggle strange rhythms rang and rolled from the bowl

Berardi’s performance of Mr. P is among the highlights of the poignant 17-minute trailer for Crohn’s documentary (, which captures the joy and spontaneity of the recording session. “This still moves me,” Crohn said, his eyes starting to water, after showing the Mr. P clip to a visitor.

“You have to let things happen and let your playing happen,” explained Esposito, who teaches music at Bard College. “The operative word there is play. For people who are not artists, they may think of play as meaning something not serious and not respectable. Artists know that the capacity for play is about as serious as we get as humans, about as deep as we can really get.”

The trailer is one of the tools Crohn is using to complete funding for the documentary, in conjunction with an online funding effort via He is hopeful the film can be completed and sold for distribution sometime this fall, the same time frame for several other Berardi-related projects. John Esposito, who released Earthship, the first of Berardi’s two CDs from the 1996 session in 2008, plans the U.S. release of the second album, Calling Coltrane in the coming months. Esposito hopes to release one or two CDs from last year’s session as well. Also on the drawing board is publication of a collection of Berardi’s autobiographical writing. In the meantime, samples of Sangeeta Michael Berardi’s artwork and poetry are available on the Sunjump Records website, ++

To contribute to this project see and search for ‘Playing with Parkinsons.’


Therapy - Music Changed Life for Amputee


Music changed life for amputee

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Randy Beamer

WOAI.Com - Kevin Higgins lost part of a leg in a motorcycle accident 15 years ago. But it was music that changed the course of his life.

Now he's won the prestigious Jefferson Award for using music to help others.

When you have this opportunity to help somebody and make a change, no matter how small it is in the world, that's a great feeling," says Higgins. "That's the greatest feeling in the world."

But for Higgins that greatest feeling would only come after the worst pain.

Today he's playing beautiful music (which he composed) at Alamo Music in downtown San Antonio, where he sells pianos.

But 15 years ago Higgins was a technology company salesman in Houston when a motorcycle accident took part of his left leg. The accident changed his life.

"Because of the type of traumatic amputation that I had, I had some resulting nerve damage called phantom pain. And so I was still working full time and living my life, but I was experiencing a lot of intense agony."

"And I tried taking medications. I had several surgeries. I had the pain all the time, I had trouble, a lot of trouble sleeping."

But finally things changed.

"One day I wandered into a piano store and I started playing the piano. I couldn't feel the phantom pain! So what I did was I started playing the piano every day as much as I could. So it made a whole lot of sense for me to switch industries so I could be where the pianos were at."

"That's how I discovered the healing power of music."

Since then he's learned more about the science behind music's power; how actively playing music helps re-wire the brain.

"It engages both sides of the brain and it forms new neuro-pathways around those damaged pathways. So we're starting to see that type of thing like with [former Arizona Congresswoman] Gabby Giffords, where she credits being able to speak now with music therapy."

"So I think we're just barely scratching the surface of what music can do for us from a medical standpoint."

When Higgins moved to San Antonio from Houston a few years ago, he noticed the big population of wounded warriors recovering here.

"I thought well these guys are suffering the same types of amputations and traumatic injuries as I have. So it just seemed like common sense that we could help them."

At the Soldier's Angels support center across Interstate 35 from Fort Sam Houston, Higgins helped set up part of a music therapy program which is now called Operation Harmony.

Within the past few months, he started helping people with Parkinson's Disease, using the same music technology. It's Yahama's "Clavinova Connection" which links keyboards together into a network.

Diane Johnson is a nurse who also works with the American Parkinson's Disease Association.

"When the [piano] key lights up for me, it lights up for the students," Johnson says. "Then they follow those lights, so there's no music ability that they need to have whatsoever before they come into the class."

"Three of the students have tremors, but as they continue to play the music they become more relaxed, their neuro-pathways are taking a different direction and the tremors start to subside."

I ask one of the people in the class at the Franklin Park Senior Center whether it's helping.

"Yes! A million times over," she says. "I didn't know what was going to happen and to have it [tremors] go away for a little bit, it's just great."

The project using music to help these Parkingson's patients actually started out with a chance meeting.

Higgins happened to be called out to do an insurance appraisal on Diane Johnson's piano.

"We started talking about how music alleviates and helps with the pain," Johnson remembers. "And I thought, well if it works for pain, then maybe it would work for people with Parkinson's."

"So we got together we got a grant from the Rapier Foundation and started the program. And so we're finding now over the last several weeks that the benefit of the music class actually feeds into the rest of [the patient's] day for a couple of hours."

That's the same kind of cumulative benefit of music which has changed Kevin Higgins' life. And through him, it's also changing the lives of many around him.

"He's just a super guy," says Johnson. "And all of us are just thrilled to have him in our lives."

Higgins says he's thankful for the opportunity. "For God to take something that's a personal tragedy and turn it into a victory that can help's just amazing."

"I think about that all the time. What if I hadn't just wandered in wandered into the piano store? And if I had never done that, where would I be at now?"

"I think this is one of those things where God gave me the secret desire of my heart - which is to make a difference in the community.

Higgins is doing that in even more ways. He's set up a car show/fundraiser for the wounded warriors and a series of live music performances where musicians come into Alamo Music for mini-concerts for injured veterans.

For all of that hard work, selfless dedication, and inspiration, Kevin Higgins was nominated and chosen for the Jefferson Award.

Congratulations and thank you Kevin! Keep it up!



Therapy - Tai Chi Can Help Mind & Body


Tai chi can help mind and body

Copied from The Northwest Parkinson’s Foundation Weekly News Update


Diane Schlindwein - Early Monday evenings, when other folks are rushing home from work, a group of 10 individuals are quietly learning the art of tai chi at the Center for Living in the Prairie Heart Institute at St. John’s Hospital.

Ron Taylor takes his spot in the front row, right next to his instructor Yi Karpen. He moves slowly and deliberately, just like all of his classmates, who are all men and women in their 50s or 60s. Yet in his eyes, a look of quiet determination shows he’s here for a serious reason. Taylor isn’t taking tai chi only for the benefits of relaxation — he’s in the class because he is doing his best to beat Parkinson’s disease.

Taylor, who lives in Pleasant Plains, is dealing not only with Parkinson’s but also a crushed vertebrae and neurological problems with his left leg. While reading one of his Parkinson’s publications, he found an article touting the benefits of tai chi. Right away, he decided to try it out.

Research based
Parkinson’s disease, a progressive disorder of the nervous system, affects movement and motor control. Tai chi, the martial art involving slow rhythmic movement, has been shown to benefit seniors by maintaining strength and balance. It also has been found to help people who have Parkinson’s.

Taylor was right to follow up on the reading, Karpen said. She explains that a study, which appeared in the Feb. 9 issue of the New England Journal of Medicine, has gotten a fair amount of attention.

Research scientist Fuzhong Li divided Parkinson’s patients into three groups. One group did resistance training with weights. Another attended stretching classes. The third took up tai chi. Each group participated in a 60-minute class twice a week for six months.

After the classes ended, Li found that tai chi patients were stronger and had much better balance than patients in the other two groups. Moreover, Li reported that the tai chi participants’ balance “was four times better than those patients assigned to the stretching group and about two times better than those in the resistance-training group.”

Karpen, who grew up in China, said she has been teaching in Springfield for 10 years.

“There are 24 forms in tai chi, but everybody teaches it differently,” she said. “I teach the simplified version that is most popular in China. With beginners, I introduce some new forms each week and then we practice it next time.”

She said most of her students are at least middle aged and come for a variety of reasons.

Anywhere, anytime

Ron Taylor attends the class with his wife of 45 years, Christy Taylor.

“I come along to offer encouragement,” said Christy. “I’ve found that it is very relaxing.”

The couple has also purchased a DVD from Karpen so they can practice at home.

“Tai chi is good for people who don’t want to go to the gym and sweat,” said Karpen. “There is no equipment and all you need is 10 feet of space. You can practice anytime and you can even do this on your coffee break.”

Karpen hopes people will continue to come to the classes to learn tai chi and to feel better both physically and emotionally.

“Slow motion exercise often builds confidence in people. I had one lady who was up in her 70s. When she first came here she used a cane. After a while, she was here doing tai chi without her cane.”

As for her current class of new tai chi enthusiasts, all is going well, Karpen reports. She is especially pleased with Ron Taylor’s progress.

“Ron is very serious about this and he really works at it,” she said. “I watch Ron because his left leg has a lot of problems. During the first class, he could hardly move it. But he is doing so well. In only three weeks his balance is so much better.”



Therapy - Vitamin K2


Vitamin K2: New Hope for Parkinson's Patients?

Copied from The Northwest Parkinson’s Foundation Weekly news Update


Science Daily - Neuroscientist Patrik Verstreken, associated with VIB and KU Leuven, succeeded in undoing the effect of one of the genetic defects that leads to Parkinson's using vitamin K2. His discovery gives hope to Parkinson's patients.

This research was done in collaboration with colleagues from Northern Illinois University (US) and was recently published in the journal Science.

"It appears from our research that administering vitamin K2 could possibly help patients with Parkinson's. However, more work needs to be done to understand this better," says Patrik Verstreken.

Malfunctioning power plants are at the basis of Parkinson's.

If we looked at cells as small factories, then mitochondria would be the power plants responsible for supplying the energy for their operation. They generate this energy by transporting electrons. In Parkinson's patients, the activity of mitochondria and the transport of electrons have been disrupted, resulting in the mitochondria no longer producing sufficient energy for the cell. This has major consequences as the cells in certain parts of the brain will start dying off, disrupting communication between neurons. The results are the typical symptoms of Parkinson's: lack of movement (akinesia), tremors and muscle stiffness.

The exact cause of this neurodegenerative disease is not known. In recent years, however, scientists have been able to describe several genetic defects (mutations) found in Parkinson's patients, including the so-called PINK1 and Parkin mutations, which both lead to reduced mitochondrial activity. By studying these mutations, scientists hope to unravel the mechanisms underlying the disease process.

Paralyzed fruit flies

Fruit flies (Drosophila) are frequently used in lab experiments because of their short life spans and breeding cycles, among other things. Within two weeks of her emergence, every female is able to produce hundreds of offspring. By genetically modifying fruitflies, scientists can study the function of certain genes and proteins. Patrik Verstreken and his team used fruitflies with a genetic defect in PINK1 or Parkin that is similar to the one associated with Parkinson's. They found that the flies with a PINK1 or Parkin mutation lost their ability to fly.

Upon closer examination, they discovered that the mitochondria in these flies were defective, just as in Parkinson's patients. Because of this they generated less intracellular energy -- energy the insects needed to fly. When the flies were given vitamin K2, the energy production in their mitochondria was restored and the insects' ability to fly improved. The researchers were also able to determine that the energy production was restored because the vitamin K2 had improved electron transport in the mitochondria. This in turn led to improved energy production.


Vitamin K2 plays a role in the energy production of defective mitochondria. Because defective mitochondria are also found in Parkinson's patients with a PINK1 or Parkin mutation, vitamin K2 potentially offers hope for a new treatment for Parkinson's.


Therapy - Draw & Play


Draw and play keep Parkinson’s at bay

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Euronews - “I lost the swing in my left arm. It did not work very well. I realised something was wrong”.

“My problems started 11 years ago. So I went to the doctors, and they eventually diagnosed Parkinson’s disease. It was 2002”.

“Now I cannot work in the garden as often. At least not for as long as I used to. I really enjoyed electronics and used to solder small components. It is now impossible for me. I cannot do it any more”.

Those are the thoughts of three people who suffer from an incurable disease. In Europe there are around 75,000 new cases of it every year. All have volunteered to find new diagnosis and tools for rehabilitation. This is the story of how European patients and researchers have teamed up to fight Parkinson’s disease.

At a hospital in the Netherlands, an unusual experiment, involving a 68-year-old patient with Parkinson’s disease.

“I started suffering from pain in my lower back. But it took almost 3 years for doctors to identify my disease as Parkinson’s,” explains Harmien Floor-Schotten a Parkinson’s disease patient .

That late, difficult diagnosis motivated her and other volunteers – both Parkinson’s patients and healthy subjects – to take part in a pre-clinical trial aimed at testing a revolutionary pen.

It has been designed to help to identify the elusive early stages of the disease. Esther Smits, Movement scientist at the University Medical Centre Groningen explains: “We have to measure muscle activity so we can see what happens in muscles when volunteers are moving their arms to make the drawings.”

The writing patterns of both Parkinson’s patients and healthy subjects are compared. Those patterns, scientists say, can possibly help them to determine if a patient is suffering from Parkinson’s disease or from other less dramatic neurological disorders.

“We do find some clear differences between the healthy controls and the Parkinson’ s patients that we have measured. On the one hand, these differences are what we expected. So for instance, Parkinson’ s patients move slower in all tasks. But also some differences were a little less expected. For instance, in the writing tasks, we found that Parkinson’s patients write considerably smaller than healthy people, even if they are not complaining of writing smaller. So this in particular can be a sensitive tool for diagnosis,” points out Natasha Maurits, Clinical neuroengineer at the University Medical Centre Groningen.

The pen has been re-engineered by scientists under a European Union research project. The prototype has sensor technologies that help to understand the complex coordination processes used by the nervous system during the course of handwriting.

Rutger Zietsma, is the coordinator of the DiPAR project, “We have built on previous techniques for recording handwriting and motion. Starting with digitising tablets for recording handwriting, also using motion analysis systems to look at upper body motion and limb motion.

‘Then we built this pen system with these different sensors and data analysis techniques. We developed algorithms that would automatically analyse motion, the control behind that motion in the nervous systems of the users”.

The next steps of the pre-clinical trials will involve the comparison of writing patterns between patients with Parkinson’s and those suffering from tremors and other movement disorders.

Early diagnosis, scientists say, is key to offer patients better advice, monitoring and rehabilitation.

“What I would hope is that we have got a tool that is easy to use, and that in 10 or 15 minutes gives you a profile of likely diagnosis. I don’t think we’ ll say with certainty that this is Parkinson’s disease, that is not possible. But it might be possible to say that this is a patient that better be seen by an experienced neurologist,” says Natasha Maurits, Clinical neuroengineer at the University Medical Centre Groningen.

Nico Leenders, Neurologist at the University Medical Centre Groningen adds: “We can make a distinction between Parkinson’s and other conditions, like essential tremor. Or we can assume, well, this is perhaps a movement problem, but it is more related to an elderly person, and it will not develop into a Parkinsonian symptom. Then, you can tell the person more safely what his or her future will be.”

Meanwhile, in Belfast, researchers are trying to develop new rehabilitation tools based on sensorial stimulation.

The first thing scientist had to understand was if and how Parkinson’s patients’ movements can improve when there is a sort of trigger in their environment.

Marta Bienkiewicz, Cognitive neuroscientist at Queen’s University Belfast explains: “We are trying to understand more what happens when there is additional sensory information in the environment that you can perceive by hearing or seeing. And why it improves the motor control, the movement in Parkinson’s disease patients.”

“I can see the benefit. My golf swing, to start with has much improved,” says William McDonald a Parkinson’s disease patient.

Researchers then developed tailor made video games on existing commercial platforms. Games allow Parkinson’s patients to improve balance
and overall mobility.

Cathy Craig is the coordinator of the Tempus_G project. “We are interested in understanding how the brain can use perceptual information to guide our actions. So for instance in the games that are being played, you see the falling apples. That is perceptual information that tells us what is happening. And that information guides the movements. The apples are falling at a certain speed, and the players have to control the movement of the basket so they actually catch the apples”.

Both patients and researchers see huge psychological and physical advantages in these easy, fun rehabilitation techniques.

“I find it fun. I find it enjoyable. I find it worth doing. During this trial, John and I have been coming together as volunteers. And we have this feeling of competing against each other. It does not matter who wins. It is just the fun of it, the companionship,” Jim Henry a Parkinson’s disease patient.

Caroline Whyatt a psychologist at Queen´s
University Belfast says: “A video game like this makes you realise how much you can actually do. And I think that confidence then will help people like John to have this confidence to go for a walk or do other types of physical activity which will then help the balance as well. So it is a kind of circular motion. It is building up. So it is getting the confidence from the games, and then using that confidence to go for a walk, and when you go for a walk you have more confidence, so you are going to walk more often. So it is kind of a cycle”.

“I find the mobility is the big issue here. The objective is to be more mobile than what we normally are. I find it very useful,” says John Herron a Parkinson’s disease patient.

“From a physical point of view, the patient is essentially encouraged to move, particularly around the torso area. A lot of participants in the trial have commented that they feel much looser here, that they can rotate a lot better. And that rigidity in the body is lost a little bit. So patients feel a lot freer, and more mobile,” explains Cathy Craig the coordinator of the Tempus_G project.

Jim Henry reflects: “It is brilliant. It has made a big change for me, because it is exercise for fun”.

But researchers see even further. They are currently investigating if Parkinson s patients can improve their gait by just listening to regular sounds, including, for instance, the sound emitted by their own feet during walking.

Will Young a psychologist at Queen’s University Belfast explains: “Using these reflective markers we can get very detailed information about how people can regulate the timing of their walking. One thing that tends to happen with Parkinson’s is that patients tend to shuffle. And one thing we can measure is stride length, so we can look to help people to extend that length to walk more efficiently.”

Matthew Rodger also a psychologist at Queen´s University in Belfast says, “What this graph shows us is how the different parts of her body, so the head, the torso, the arms and the legs importantly, how these parts are moving as she walks. And so we can try to understand what sort of differences there are in the patient’s walking when she is perceiving the sounds, compared when she is walking without all these sounds. So we can check if there is any improvement, if there is a better stability in her actions.”

Researchers, scientists and patients who have volunteered hope that will lead to better easier and more effective rehabilitation treatments in the near future.

“To see that researchers are taking such an interest in the disease it is really encouraging. To see that there is a life with Parkinson’s. That it is not that you are just coming to an end,” says Mary McAllister a Parkinson’s disease patient.

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