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Welcome to Our Parkinson's Place


I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's
diseases as well and thought it would be nice to have a place where
updated news is in one place. That is why I began this blog.
I am not responsible for it's contents, I am just a copier of information searched on the computer. Please understand the copies are just that, copies and at times, I am unable to enlarge the wording or keep it uniformed as I wish. This is for you to read and to always keep an open mind.
Please discuss this with your doctor, should you have any questions, or concerns. Never do anything without talking to your doctor. I do not make any money from this website. I volunteer my time to help all of us to be informed. Please no advertisers. This is a free site for all.
Thank you.


Saturday, July 9, 2016

Common Causes of Lower Body Parkinsonism: By Dr. De Leon

By defeatparkinsons
July 9, 2016



Once upon a time "arteriosclerotic (hardening of arteries) or vascular parkinsonism  (VaP)" was also known as 'lower body parkinsonism.' The latter refers to a type of Parkinson's in which patients present with what is now referred to gait ignition failure. This is what President George H. W. Bush was diagnosed with a few years ago. The reason I am writing about this because more often than not this diagnosis is missed or mis- diagnosed as Parkinson's disease all too frequently which can lead to a great deal of frustration and disability.
President George H. W. Bush

This is characterized by broad based slow gait, reduced stride length, start hesitation, freezing and paratonia or gegenhalten -"form of hypertonia with an involuntary variable resistance during passive movement."
Although, atherosclerotic disease CAN cause lower body PD this is by no means only etiology. This illness has no rigidity in the lower extremities. The disturbance is only evoked by gait itself. there are 3 subtypes:
  • ignition (gait) apraxia (the discrepancy between the severity of gait impairment and the ability to perform other leg movements normally {e.g. cycling in the air while sitting}.
  • equilibrium apraxia
  • mixed gait apraxia  
Although, one of the main causes of lower body PD is vascular disease such as strokes it is not the only cause. When lower body parkinsonism is caused by strokes in the frontal lobes then we can say its vascular PD (VaP). We also see abnormalities in the MRI revealing vascular disease. The Dat scan is normal for lower body PD caused by vascular causes as well as by NPH.
Another common cause is normal pressure hydrocephalus (NPH). The  issue of correct classification has been complicated by the fact that patients with both vascular causes and NPH have similar amounts of freezing or start hesitation of gait. Interestingly enough although clinically we tend to distinguish them on grounds of presentation post mortem - there appears to be no difference in pathology between patients having VaP and NHP perhaps indicating similar disease. this is crucial because the treatment that works best for lower body PD caused by vascular disease is removal of spinal fluid  which is the standard treatment for NPH. Vap DOES not respond to dopaminergic therapy. Although, there was a small study which suggested mild improvement with ropinorole. In my practice only treatment known to work is spinal fluid removal periodically. 
NPH is a communicating hydrocephalus (fluid in brain) usually caused by trauma or infection. This causes a triad of symptoms: NL intracranial pressure (<20mmHg)
  1. gait apraxia (freezing),ataxia
  2. urinary incontinence- urgency /frequency
  3. dementia (cognitive decline)
Diagnosed with clinical symptoms, Lumbar puncture and a cysternogram.
Prognosis is good if diagnosed early because the longer you wait to institute shunt to remove fluid - you will not be able to reverse urinary and especially cognitive dysfunction!

 Most common causes of lower-body parkinsonism.

  1. Normal pressure hydrocephalus

  • Idiopathic
  • Secondary (meningitis, head trauma)
2.  Vascular parkinsonism
  • Binswanger's disease (subcortical ateriosclerotic encephalopathy)
  • Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL)
  • Dilation of perivascular spaces (also very common in CADASIL patients)
  • Multiple lacunar infarcts
3. Frontal lobe lesions
  • Tumors- primary and metastatic
  • Ischemia
  • Demyelination- multiple sclerosis
4. Progressive supranuclear palsy- will have abnormal Dat unlike the other 3.
One key factor to remember is that proprioceptive, visual, or auditory cues are highly effective in increasing stride length and cadence in Parkinson's disease, but not so in NPH  VaP  which often get misdiagnosed as PD by non-experts.
NPH is a relatively rare diagnosis which is not often thought about but a cause of reversible treatable "parkinsonism." Therefore, if you or a loved one having only lower body symptoms especially if unresponsive to dopa think NPH.
Sources:
Vascular or "lower body parkinsonism": rise and fall of a diagnosis-2011 Nov30:64(11-12):385-93. PubMed
Images brain MRI of patient suspected with VaP - from nature clinical practice neurology  vol4 No1
https://defeatparkinsons.com/2016/07/09/common-causes-of-lower-body-parkinsonism-by-dr-de-leon/

Swimmer seeks to set Guinness World Record, creating awareness for Parkinson's disease

July 9, 2016

ULTRA-DISTANCE TRIATHLETE Adam Ellenstein will attempt a Guinness World Record for the fastest north-to-south non-stop swim of Okanagan Lake in Penticton on July 25 to 26 starting in Vernon.

Ultra-distance triathlete Adam Ellenstein will attempt a Guinness World Record for the fastest north-to-south non-stop swim of Okanagan Lake in Penticton.
He will swim 105 kilometers (65 miles) starting in Vernon on July 25 and concluding in Penticton July 26 in support of those with Parkinson’s and the Davis Phinney Foundation.
A Guinness World Records adjudicator will evaluate evidence, which includes videos, photos, independent witness statements and a GPS tracking log to verify and confirm whether Ellenstein, 39, establishes a new Guinness World Records title.
Fans can follow Ellenstein as he trains and receive updates during the race on the VictorySwim105 Facebook page (www.facebook.com/VictorySwim105 ) and use the hashtag #VictorySwim105 when posting to social media.
“Because of the extreme distance and non-stop activity, events like this cannot happen without a crew,” said Ellenstein in a press release.
He is a solo Race Across America (RAAM) qualifier (400 miles) and last year he completed a 30-km (18 mile) swim across Lake Winnipeg in preparation for his attempt. He successfully completed Ironman (140.6 miles) and UltraMan (320 miles) triathlons.
Ellenstein estimates the swim will take 40 hours to complete.
"There is no way I could do it alone. While on the surface, it sounds like a solo attempt, it is really a team sport," said Ellenstein. "My training puts me in a position to succeed, and the crew keeps me fueled, on course and filled with love. Success in these events is all about the crew.”
A crew of 10 motorized boats and safety kayaks will accompany Ellenstein on his swim.
VictorySwim105 will raise awareness and support to benefit those with Parkinson’s disease through a partnership with the Davis Phinney Foundation (www.davisphinneyfoundation.org/). The Foundation’s mission is to help people with Parkinson’s to live well today. For this reason, Ellenstein considers this his most meaningful endurance challenge to date.
“The swim has a greater meaning than simply going out to test my endurance limits," he said. “I am swimming to support and honour my aunt, Susan Scarlett, who has Parkinson's disease. To her own amazement, she is training to swim portions of the swim with me. We hope people with Parkinson’s, their caregivers and their loved ones will also be empowered to take up the challenge.”
Guinness World Records (www.guinnessworldrecords.com) is the global authority on record-breaking achievements. First published in 1955, the annual Guinness World Records® book has become one of the biggest-selling copyright titles of all time, selling 120 million copies to date in 22 languages and in more than 100 countries. The internationally renowned brand is now also available across a number of platforms — GWR's global television shows are watched by 250 million viewers annually; digital media and online record-processing services attract more than 50 million visitors a year; and the live events team annually entertains and inspires 1.5 million people around the world. GWR receives more than 1,000 applications each week and has a specialized team of multilanguage record managers and adjudicators who travel the globe to verify official record attempts. GWR also has a commercial division (Guinness World Records Corporate) that offers accessible record-breaking business solutions to other organizations and brands.

http://health.einnews.com/article/334425109/SRzXH7Hl_3Z-rJCR



Friday, July 8, 2016

Towson yoga class helps Parkinson's suffers restore mind-body connection

July 8, 2016

The problems began with his voice, which mysteriously started growing fainter. Then came his handwriting, which began to shrink.
And when Carl Schuetz's gait became oddly halting, his then-wife asked why his strides were so uneven.
Schuetz, 63, of Timonium, had developed Parkinson's disease, a disorder of the central nervous system that causes ever-worsening symptoms ranging from tremors and rigidity to slowness of step. In time, it can lead to depression, impaired thinking, dementia and more. There is no cure.
But Schuetz, a graphic artist and yoga practitioner, has never been one to let external forces define him.
At a Timonium fitness club one recent Saturday, his voice was soft but steady, his movements disciplined, as he led fellow Parkinson's sufferers through 60 minutes of yoga exercises specifically designed for those who have the disease.
The men and women on the mats, each at a different stage of Parkinson's, watched him intently, straining and settling into increasingly challenging poses: the mountain, the kneeling hero, the supported bridge.
"In yoga, we try to breathe as we move and move as we breathe," Schuetz told them as he modeled the moves. "Breathe into the pose."
A few participants could only approximate the poses, known in yoga as asanasone or two shook as they tried. Several found the correct position, their faces showing focus and strain.
Schuetz has always had a knack for reinventing himself. A Maryland Institute College of Art alum, he turned a graphic design education into a career as a web developer, teacher and software designer. His clients included NASA and the University of Maryland School of Medicine.
When he was diagnosed with Parkinson's in 2011, he took a proactive approach.
Plunging into research, he was dismayed to learn he would always have the disorder — but encouraged to find that new treatment approaches are helping patients manage and even significantly delay the onset of symptoms.
One was exercise, including yoga, which neurologists have come to believe can bolster a patient's balance, strength and emotional outlook.
Schuetz ditched his old career, earned certification as a yoga instructor, and set up shop to share his new expertise.
He's now the driving force behind "Yoga For Parkinson's," a weekly class at ACAC Fitness in Timonium. (A colleague also offers the class each Wednesday at the Bain Senior Center in Columbia.)
It's free, thanks to support from the two centers, from the Parkinson Foundation of the National Capital Area in Falls Church, Va., and from Yoga for Parkinson's, a nonprofit Schuetz founded in 2013.
"Parkinson's patients have enough expenses to deal with; we don't want to add to them," Schuetz says.
'The shaking palsy'
An English physician, James Parkinson, first described the condition he called "the shaking palsy" in 1817. But it wasn't until the mid-20th Century that scientists learned the disorder develops in conjunction with declines in the body's dopamine supply. Dopamine, a neurotransmitter, promotes movement and movement control.
Parkinson's disease can manifest itself in a range of motor-related symptoms — stiffness, tremors, poor balance, difficulty initiating movements — as well as non-motor symptoms, such as digestive problems, sleep disorders and sexual dysfunction. Left untreated, it grows worse over time.
Experts say a patient's sense of losing physical control can also lead to depression, feelings of isolation and other forms of emotional distress.
No one knows what causes Parkinson's, though it affects more than 1.5 million Americans, including about 60,000 who are newly diagnosed every year, according to the American Parkinson Disease Association. The median age of onset is 60, with up to 10 percent diagnosed before age 40.
"People think of Parkinson's as a disease of the elderly, but half of all patients are diagnosed during what you might call the prime of their lives," said Dr. Lisa Shulman, a neurology professor at the University of Maryland School of Medicine who specializes in movement disorders.
The disease can be difficult to diagnose — no standard lab test exists, and other disorders share some of its symptoms. Medications help by stimulating dopamine production, but they lose their effectiveness over time.
Some cases call for the surgical implantation of neurostimulators.
More recently, a consensus has developed that consistent exercise helps most patients in a variety of ways.
"There are more than a hundred studies investigating a large range of different types of exercise,´ said Shulman, who also is the co-director of the Parkinson's Disease and Movement Disorders Center at the University of Maryland Medical Center. "Based on the evidence, we're confident that exercise is an important intervention for improving symptoms and delaying disability in Parkinson disease."
Research done at the University of Maryland School of Medicine in 2011 suggests that instructor-led group exercise — in yoga, tai chi, zumba and more — works especially well.
Yoga is one of the more effective because it's "based on body stretching to preserve range of motion and enhancing mind-body connection to reinforce mindful movement of the body," Shulman said.
Incremental triumphs 
Schuetz's class is a blend of vinyasa yoga, which stresses flow between poses, and Iyengaryoga, which emphasizes holding the poses correctly.
He demonstrated the " tree" pose, which calls for a participant to stand on one leg, bend the other at the knee, and press the second foot against the calf of the first leg. As he executed and held the pose, he explained that he couldn't even begin to do it two years ago.
Such a triumph is no small feat for Parkinson's patients, he said, many of whom have grown used to taking minutes, not seconds, to perform such simple tasks as buttoning a shirt.
"The ability to do a balance pose uplifts and builds confidence, and that extends into other areas of life," Schuetz said.
In the back row, class member Marty Lefstein, 64, of Parkville, shook while holding a crescent lunge pose. Diagnosed 21 years ago, he said he'd reduced some of his many symptoms through medicine and surgery, but that yoga has helped affirm the improvements.
"If I keep at it regularly, doing it at home, it helps with my balance [and] helps calm me inside," he said.
Bob Falck of Cockeysville, 65, was diagnosed this year after noticing a tremor in one hand. He enrolled as a "preemptive measure," to delay any further progression, he said, adding that the custom yoga seems to be working.
"I was already an exercise fanatic, but this is helping me with flexibility and balance," he said. "I'm glad I discovered this."
Frank Pondolfina of Nottingham, 68, said the yoga class — together with other activities, such as dancing and gardening — brings effects that carry over away from the mat.
"I used to have tremors and shoe-shuffling in the mornings, but I have very little of either one now, and my posture improves throughout the day [after doing yoga]," said Pondolfina, who was diagnosed in 1977.
After an hour, Schuetz led the class through a relaxation regimen.
"Feel the cool air coming in through your nostrils and the warm air leaving your body," he said as they lay on their backs. "Let there be no worry lines, no creases in your foreheads. Receive the benefits of your yoga practice."
As recorded sitar music filled the room, Schuetz's charges gathered their belongings, said their farewells and left.
Yoga can't cure Parkinson's disease, Schuetz repeated, but even as the disorder disrupts the mind-body connection, yoga has been helping human beings strengthen that connection for thousands of years.
It has helped him to re-learn walking, writing, speaking and more, he said, staving off what would have been inevitable decline. He hopes to share that outcome with others.
"I'm going to be practicing yoga as long as I live," he said.
Video:
http://www.baltimoresun.com/news/maryland/baltimore-county/towson/bs-md-yoga-for-parkinsons-20160602-story.html

Thursday, July 7, 2016

Penn students’ start-up XEED puts wearables to work against Parkinson’s disease


July 7, 2016


The internet of things, and wearables in particular, may not be quite living up to the hype, but it turns out they may be just the thing for people suffering from Parkinson’s disease. A pair of engineering students from the University of Pennsylvania have started their own company to pursue the possibility.
Sade Oba and Alfredo Muniz, founders of XEED, grew up near one another in Houston and were interested in health-related applications for technology well before they attended Penn. The suitability of wearable devices for Parkinson’s treatment occurred to them during their engineering studies there (mechanical for Oba, electrical for Muniz).
“As robotics majors, Alfredo and I were working on a working on a mobile smart home robotic platform,” Oba told me in an email. “People weren’t very receptive to the product when we attempted to commercialize it… We decided to take our advisor’s advice and took a few small sensors from the robot and re purposed them towards precisely tracking movement.”
Parkinson’s is characterized by intermittent tremors, which can be controlled both through drugs and physical therapy. But it helps to understand when those tremors occur and what the patient’s activities look like outside of visits to the doctor.

XEED’s bracelet-like wearables track the user’s limbs throughout the day, noting both the time and intensity of tremors as well as the extent of their voluntary movements. The data can be accessed by caregivers, but is also sent to a smartphone app that can give instant feedback, suggesting movements or letting users track their progress.
“Patients can take this information and figure out exactly how they need to adjust their everyday activities to improve their everyday life,” said Oba in a Penn-produced video.
The data are useful for individuals, their physical therapists, and their physicians, but once aggregated, could also form a highly useful database for researchers.
“Currently we are designing our third prototype,” Muniz wrote in an email to TechCrunch. “We will be testing the batch of 50 on a small group for two weeks, paying attention to how they put the devices on, whether the LED indicators are useful, whether they remember to charge it, and what modifications need to be done to the phone app.”
It may be approaching final form, but the XEED device will still require FDA approval, whether it’s classified as an assistive or Class 1 medical device. That means it’ll be quite a while before it’s deployed at large — though smaller-scale studies are certainly going to continue.

As for funding, the pair won Penn’s “President’s Innovation Prize” last year, giving them $200,000 to work with as they iterate on the idea and establish their company.
“We have also been contacted by a few investors who would be happy to help us if we got in a pinch,” wrote Muniz, “but we are currently seeking NSF and NIH (SBIR) grants.”
XEED is also partnering with a local Parkinson’s rehabilitation center, and will meet later this month with the Michael J. Fox Foundation to discuss options there as well.
FEATURED IMAGE: UNIVERSITY OF PENNSYLVANIA
https://techcrunch.com/2016/07/07/penn-engineers-start-up-xeed-puts-wearables-to-work-against-parkinsons-disease/

The Tuchman Foundation, through the Parkinson's Alliance, helps to fund UCLA scientists in discovery of protective strategy against pesticide-linked Parkinson's disease

July 7, 2016

Martin Tuchman, Chairman of the Board, The Tuchman Foundation, Inc.

KINGSTON, N.J.
 The Tuchman Foundation, Inc. is pleased to announce through its affiliate, The Parkinson Alliance and the Parkinson's Unity Walk, its funding involving pesticides linked to Parkinson's disease.  This new UCLA study sheds light on the toxicity of compounds found in common pesticides that have been associated with increased risk of Parkinson's disease.  
Martin Tuchman stated: "as a result of our funding, combined with grants from the National Institute of Environmental Health Sciences, the Veterans Administration Healthcare System and The Levine Foundation, we were able to conduct this exciting new study.  We've worked with Dr. Jeff Bronstein in the past and we are very proud of his work in this area.  We look forward to funding his future projects." 
http://www.prnewswire.com/news-releases/the-tuchman-foundation-through-the-parkinsons-alliance-helps-to-fund-ucla-scientists-in-discovery-of-protective-strategy-against-pesticide-linked-parkinsons-disease-300295561.html

Questions Raised on Gene Mutation Found in Early Onset Parkinson’s Patient

Magdalena Kegel
JULY 7, 2016


Sequencing the DNA of genes with known links to Parkinson’s disease revealed a previously unknown mutation in a patient with early onset disease, but while the evidence in the study pointed to the mutation as harmful, more research is needed to confirm that role.
Gene mutations have been linked to Parkinson’s in some patients, which presents opportunity for doctors to identify factors in patients at higher risk of the disease. Because Parkinson’s diagnosis usually occurs after the brain is already extensively damaged, earlier identification and treatment might postpone the devastating process.
To improve knowledge about genetic risks for Parkinson’s disease, researchers from the University of Granada in Spain screened 134 patients from Southern Spain for mutations in eight genes previously linked to the condition.
The group was composed mainly of individuals with late-onset sporadic disease, but also included 28 patients with early onset sporadic, and nine patients with familial Parkinson’s.
DNA sequencing revealed 11 mutations in five of the genes. Most of the identified mutations had been described before, and were located in the genes GBA, LRRK2, PARK2 and PINK1.
But, in the VPS35 gene, researchers found a new mutation. The gene variant was carried by a patient with early disease onset, raising suspicions that the mutation might be linked to a type of Parkinson’s. The gene variant was explored via computer software that simulates the effects of mutations using mathematical algorithms – which determined the mutation is likely harmful.
In a press release related to the findings, researchers cautioned that the analysis does not guarantee a link between the mutation and the development of Parkinson’s disease. Future studies to explore how frequent the gene mutation is in patients and healthy people, as well as studies exploring the effect of the mutation in mice, are needed to establish a definite link.
Still, the gene is not a newcomer in Parkinson’s disease contexts. Last year, Parkinson’s News Today reported a study showing links between the gene and Parkinson’s disease.
Also, in 2014, another mutation in the same gene was linked to changes in molecular processes that researchers suspect play a role in disease development; and earlier this year the same mutation was linked to mitochondrial dysfunction – a process believed to be key in the degeneration of neurons.
http://parkinsonsnewstoday.com/2016/07/07/gene-mutation-found-early-onset-parkinsons-disease-patient/

Electric assist bikes provide meaningful exercise, cardiovascular benefits for riders

This would be great for Parkinson's too.

UNIVERSITY OF COLORADO AT BOULDER
July 7, 2016


Researchers William Byrnes (left) and James Peterman demonstrate a pedal electric bicycle in Boulder, Colorado.

A new University of Colorado Boulder study shows that using an electrically-powered bicycle on a regular basis can provide riders with an effective workout while improving some aspects of cardiovascular health, especially for riders who previously had been sedentary.
Electric assist bicycles ("pedelecs") are equipped with a built-in electric motor that provides modest assistance while the rider is actively pedaling, making it easier to cover greater distances and hilly terrain. Pedelecs have steadily grown more popular with consumers over the past decade, especially in Europe and Asia.
While an assist from an electric motor would get a rider disqualified from a competitive cycling competition such as the Tour de France, CU Boulder researchers were interested in studying whether or not pedelecs could help physically inactive non-cyclists achieve recommended daily fitness levels. 
To conduct the study, the researchers recruited twenty non-exercising volunteers who were sedentary commuters (car commuters). The researchers tested various aspects of their health, including blood glucose regulation and fitness. The volunteers were then asked to substitute their sedentary commute for riding their pedelec at the speed and intensity of their choice for a minimum of 40 minutes three times per week while wearing a heart monitor and a GPS device.
After a month, the volunteers came back to the lab and had their health tested again. The researchers noticed improvements in the riders' cardiovascular health, including increased aerobic capacity and improved blood sugar control. 
"Commuting with a pedelec can help individuals incorporate physical activity into their day without requiring them to set aside time specifically for exercise," said James Peterman, a graduate researcher in the Department of Integrative Physiology at CU Boulder and lead author of the new study.
Pedelec bicycles are designed to provide motorized assistance up to speeds of 20 miles per hour. Above that speed, riders must provide all the pedaling power themselves. Based on GPS data, the riders involved in the study rode at an average speed of 12.5 miles per hour and reported no crashes or accidents.
The city of Boulder provided partial funding for the study. Data from the research was provided to the city to assist with the decision on whether or not to allow pedelecs on bike paths.
http://www.eurekalert.org/pub_releases/2016-07/uoca-eab070716.php

Parkinson's sufferer gearing up for a 100 mile bike ride for charity

July 7, 2016

David Brodie


A MAN diagnosed with Parkinson’s disease is saddling up for a 100-mile cycle to raise vital funds for research into the neurodegenerative brain disorder.
David Brodie, 62, of Chatsworth Road, Barnet, was diagnosed with Parkinson’s three years’ ago.
Mr Brodie, his son Ben Brodie, 23, his brother Philip Brodie, 58 and his close friend Peter Thornton, 60, will take part in the London to Surrey cycling event on Saturday July 31 and between them hope to raise £50,000.
David is a retired accountant and charity director, he founded Taxaid.
He currently volunteers as a teacher of English to refugees.
He said: “This challenge combines two of my passions - cycling and the urgent need to find better treatments and a cure for Parkinson’s, which affects millions of people around the world.
“I have always loved cycling, and as I get older I am determined to remain able to cycle over 100 miles in a day. I feel lucky that the medication I take, to control my symptoms, is still working well so that I can participate in this iconic ride.
“When I was diagnosed, I was told that there would be a cure for Parkinson’s within 10-15 years but I’ve since met many people in the Parkinson’s community who were also told this and sadly for them, that 15 year deadline has come and gone.
“That’s why I want to raise as much as I can through this challenge, so we can quickly get closer to a cure for everyone affected by the condition.”
Most people’s symptoms take years to develop, and they live for years with the disease.
He added: “The medication controls physical symptoms well, although I do things more slowly than before. The main problems are getting enough sleep and feeling very tired a lot of the time.”
To prepare for the challenge, David has been training three times a week, covering between 25 and 70 miles each time.
So far, he has raised almost £20,000 for research into the incurable disease. 
Everyone who donates will be entered into a free prize draw to win a print of ‘Helping Hand’, a piece of artwork donated by prize-winning London artist Eliza Southwood, whose grandfather lived with Parkinson’s.
Paul Jackson-Clark, director of fundraising at Parkinson’s UK, said: “I would like to thank David and his team for taking on the 100-mile cycle to raise funds for us.
“As the UK’s Parkinson’s research and support charity we’re leading the way to find better treatments and ultimately a cure, but our work wouldn’t be possible without donations and fundraisers like David.”
http://www.barnet-today.co.uk/article.cfm?id=111353&headline=Parkinson's%20sufferer%20gearing%20up%20for%20a%20100%20mile%20bike%20ride%20for%20charity&sectionIs=news&searchyear=2016

UPDATE ON GDNF TRIAL: ANALYSIS UNDERWAY

July 7, 2016


The groundbreaking GDNF trial is nearing completion and in-depth analysis of the data is underway.
Initial data, released today, suggests the treatment is safe but that there was no significant difference between participants who received GDNF compared to those who received a placebo (dummy) drug.
These initial findings appear disappointing but the full results and analysis may yet reveal positive insights.

What is GDNF?

GDNF (or glial cell line-derived neurotrophic factor) is a special protein that is naturally produced inside the brain and supports the survival of many types of brain cells – including the cells lost in Parkinson's.
We will be working to share the results of the trial as quickly as we can
Dr Alan Whone, Principal Investigator in the GDNF study
In total, 41 people with Parkinson's are taking part in the clinical trial in Bristol which is divided into two phases.
The first phase was a 9-month double blind trial. 35 participants received either GDNF or a placebo drug and neither researchers nor participants knew which one they were getting at the time.
Now this phase is complete, researchers can measure the difference the drug makes to Parkinson's. The second phase, where all participants receive GDNF, is currently underway.
The trial aims to establish whether treatment with GDNF has the potential to slow, stop or reverse the course of the condition.

When and how will results be announced?

Dr Alan Whone, Principal Investigator for the study commented:
"It's important to stress that there is a huge amount of careful analysis required to understand the results of this extremely complex clinical trial.
"That in-depth analysis will be our focus for the next few months. We will be working to share the results of the trial as quickly as we can, and hope to be able to do this before the end of 2016."
http://www.parkinsons.org.uk/news/7-july-2016/update-gdnf-trial-analysis-underway

Galway teen entrepreneur lands keys to new Nissan

July 7, 2016



Galway teenage medical entrepreneur Edel Browne has landed the keys to a new 162 registered car as a Nissan Generation Next ambassador.
Nineteen-year-old Edel from Athenry secured her place as one of 11 Nissan Generation Next ambassadors after a month of public voting. A total of 81,000 votes were cast for 20 finalists, with the top seven automatically qualifying to join the ambassador programme.
Edel was one of four finalists chosen by Nissan to join the programme, having impressed them with her enterprise, ingenuity and campaign to secure 2,846 votes. The talented founder of Free Feet Medical has developed innovative technology to help reduce gait freezing for people with Parkinson’s disease. Her device has the potential to improve mobility and quality of life for up to 10 million people suffering from Parkinson’s disease globally.
Edel was given the choice of a new, taxed and insured car from Nissan’s award-winning fleet to drive for a year and selected a personalised Nissan Juke as the car best suited to helping her to drive her business to the next level of success.
“I want to thank everyone who voted for me. I am delighted to become a Nissan Generation Next ambassador and to drive away with my new Nissan Juke It is going to make such a difference to what I want to achieve. I’ll never look back with such a great car,” she says.
Edel, who is in her second year of a BSc in Biotechnology at NUI Galway, plans to use her new Nissan to travel to Parkinson’s Associations across Ireland to present her work and to conduct market research to improve Free Feet Medical’s product so that she can bring it to market.
More than 1,000 ambitious achievers applied to join the Nissan Generation Next ambassador programme which is now in in third year. The innovative programme was developed by Nissan to support Ireland’s new generation of leaders and champions to get ahead on their journey to success.
“Edel is an exceptional entrepreneur who shares Nissan’s commitment to excellence and innovation, says local Nissan dealer, Michael Butler, dealer principal at Windsor Galway Nissan. "We are delighted to welcome her to the Nissan Generation Next ambassador programme and to supply her with an award winning Nissan Juke so she can drive her business to the next level.”
http://www.advertiser.ie/galway/article/85834/galway-teen-entrepreneur-lands-keys-to-new-nissan

Wednesday, July 6, 2016

Parkinson’s symptoms blocked in mice

BY TIM SANDLE 
JULY 6, 2016
Scientists, blocking an enzyme, have been able to block the symptoms of Parkinson’s disease. This is not a cure, but it could be the basis for managed treatment program.


Parkinson’s symptoms blocked in mice





Parkinson’s disease is a degenerative disorder of the central nervous system mainly affecting the motor system. The first wave of symptoms includes shaking, rigidity, slowness of movement and difficulty with walking and gait. These symptoms are manifest progressively (that is, they get worse over time.) Following this, behavioural and cognitive problems can arise. 
There is no known cause for Parkinson’s disease, although it is thought to be either genetic or due to toxins. Neither is there a cure. Most research efforts are focused on addressing the symptoms. This is the reason for the current research into enzyme blocking. 
The enzyme that, when blocked, triggers the beneficial effect is called c-Abl. This was shown using laboratory mice in controlled experiments. The research team found that a drug, commonly used to treat leukemia, has the ability to inhibit the c-Abl enzyme. The drug is called nilotinib. The drug is a type of small-molecule tyrosine kinase inhibitor.
With the study, the scientists knocked out the gene for c-Abl in genetically engineered mice. The mice had been engineered to have Parkinson’s disease. When the gene was disabled, the symptoms reduced. In addition, when the activity of the enzyme was increased, the Parkinson’s like symptoms worsened. In a secondary experiment, when mice not engineered to have Parkinson’s disease also had an increase in the enzyme activity, they began to develop symptoms of the neurodegenerative disease. The totality of the research findings, therefore, points towards c-Abl.
Scientifically the reason for this is thought to be the association between c-Abl and a protein called α-synuclein, which is found in the brain. The clumping of α-synuclein is associated with Parkinon’s disease.
The results have only been confirmed using mice and considerably more research is required before human trials could take place. Here the results seen with the mice may not occur with human subjects (although the research team are hopeful.)
The study was carried out at the Johns Hopkins University School of Medicine and led by Dr. 
Ted Dawson. Speaking with BioScience Technology, Dr. Dawson said: “We plan to look into whether α-synuclein with a phosphate group on the spot c-Abl targets could serve as a measure of Parkinson’s disease severity.”
Inspired by the news, Cure Parkinson's (@CureParkinsonsT) tweeted: "This already available c-Abl drug shows promise in treating the symptoms of #Parkinsons."
The research is published in The Journal of Clinical Investigation. The paper is titled “Activation of tyrosine kinase c-Abl contributes to α-synuclein–induced neurodegeneration.”


http://www.digitaljournal.com/science/parkinson-s-symptoms-blocked-in-mice/article/469387

Patients With Parkinson's Underuse Allied Health Services

July 5, 2016


BERLIN — Medicare beneficiaries with Parkinson's disease (PD) greatly underuse allied health professional services, a cross-sectional study based on Centers for Medicare & Medicaid Services (CMS) records from 2007-2009 shows.
These professional services include physical, occupational, and speech therapy, studies of which have shown their benefits in PD, including improved motor function, independence, and fall prevention, especially with physical therapy.
The findings were presented here at the 20th International Congress of Parkinson's Disease and Movement Disorders.
The study population consisted of 742,846 Medicare beneficiaries with PD age 65 years and older. Files identified diagnosis, treatment, and procedure claims in inpatient and outpatient settings and provider specialties, as well as patient demographics and comorbid conditions. Most of the beneficiaries were white (89.2%) or black (5.8%), half were male, and two thirds were 75 years or older.
"Only 11.1% of persons with Parkinson's disease had claims for physical therapy/occupational therapy, and 11.5% for speech therapy," Michelle Fullard, MD, and colleagues said. "Race was associated with allied healthcare utilization with Asian Americans being the highest users, while African Americans had the lowest utilization."
Table. Adjusted Odds of Use of Allied Healthcare by Patients With Parkinson's Disease

CharacteristicPhysical Therapy EvaluationOccupational Therapy EvaluationOccupational/Physical Therapy TreatmentSpeech Therapy
Race    
WhiteReferenceReferenceReferenceReference
Black0.61a0.78a0.67a0.67a
Asian1.35a0.70b1.52a1.45a
Hispanic0.84a1.50a
Native American0.67a0.66a0.62a
Other/unknown1.16b1.20a1.16a
Sex    
MaleReferenceReferenceReferenceReference
Female1.07a1.16a1.11a1.03b
Age    
65-69 yReferenceReferenceReferenceReference
70-74 y0.94a0.95a
75-79 y0.92a0.88a0.89a
80-84 y0.86a0.79a0.82a
85 y or older0.76a0.72a0.72a
a P < .001. b P < .05.


Use of allied health services correlated with the number of yearly visits to a neurologist (P < .001). Compared with no neurology visit, any neurology visit was associated with a 50% higher likelihood of a physical therapy evaluation and higher likelihoods of occupational therapy evaluation (48%), occupational/physical therapy treatment (31%), and speech therapy (52%). If patients visited a neurologist more than three times in a year, the odds of receiving these services were 73%, 78%, 47%, and 80% greater, respectively.
The authors noted that the American Academy of Neurology (AAN)'s quality care guidelines state that rehabilitative options (eg, physical, occupational, and speech therapy) should be discussed with PD patients annually regardless of their stage of the disease.
Furthermore, the AAN's clinical guidelines support the use of physical therapy as a primary treatment option for mild, nondisabling parkinsonism. The study authors therefore recommend further research to identify barriers to following the guidelines.
One of those barriers is a lack of availability of allied healthcare providers, which the researchers found particularly troublesome in some upper Midwestern and Southern states.
Possible clues to barriers may be found in looking at the healthcare systems in other countries. The investigators noted that studies of allied healthcare utilization have shown referral rates for physical therapy of 63% in the Netherlands and 43% in the United Kingdom.
Another barrier in the United States may be administrative burden. Peter Schmidt, PhD, senior vice president and chief mission officer of the National Parkinson Foundation in Miami, Florida, told Medscape Medical News it is difficult to get access to allied healthcare in chronic diseases because of a therapy cap.
"People are limited to about a month's worth of occupational therapy, and for some reason, physical therapy [PT] and speech therapy have a combined cap of about a month of use," he said. "And so in order to get people beyond a month a year of PT, OT [occupational therapy], or speech, you have to ask for an exception."
That means paperwork for the physician, and there may be a bias in the patients for whom they are going to fill out the information. The present study showed disparities based on race and age.
Dr Schmidt pointed to a class action suit challenging the "improvement standard" requirement by CMS "where they said that patients had to improve in order to continue allied health therapy." The plaintiffs argued in the case that if a patient can benefit by having a slower degradation instead of an actual improvement in their status, that should be covered, too.
He said that there is no evidence that 1 month of therapy each year is sufficient for a patient with even moderate PD to learn to participate in their own care.
Dr Schmidt's own studies and those of other investigators have shown that physical and occupational therapies can help patients to exercise, which "is one of the most effective ways to even reverse the course of Parkinson's," he said. And the earlier that these services and speech therapy are provided, the better the course of the disease later because learned activities may be stored, but it may be impossible for patients to incorporate new activities later.
The Parkinson's side prevailed in the class action suit. On January 24, 2013, the US District Court for the District of Vermont approved a settlement agreement in that case, Jimmo v. Sebelius. The CMS websitenow reflects that settlement:
  • No "Improvement Standard" is to be applied in determining Medicare coverage for maintenance claims that require skilled care.
  • Skilled nursing or therapy services are covered where such services are necessary to maintain the patient's current condition or prevent or slow further deterioration safely and effectively.
There was no commercial funding for the study. Dr Fullard and Dr Schmidt have disclosed no relevant financial relationships.
20th International Congress of Parkinson's Disease and Movement Disorders. Abstract 444. Presented June 20, 2016.
http://www.medscape.com/viewarticle/865716?src=wnl_edit_tpal&uac=140844CK#vp_2