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Saturday, April 14, 2018

Early diagnosis and intervention can make all the difference in Parkinson’s disease


By SANDEEP THAKKAR APR 13, 2018 
The late boxing legend Muhammad Ali, among the best known sufferers of Parkinson's disease, is shown in 2003 at the U.S. premiere of his tribute book "Greatest Of All Time" in Miami Beach. (File photo / AFP/Getty Images)


You notice a stiffness to your walk, a softness or slowness creeping into your speech. Maybe you have chronic constipation that you can't explain or vivid dreams that literally jerk you out of sleep.

Something is happening, something that you can't name and that you don't want to address. For more than 30% of people who develop Parkinson's disease, the condition does not start with tremors, but with months or years of degenerative motor, speech and other muscular issues.Many of these people don't think to come to a neurologist, let alone one with a specialty in movement disorders. But the earlier a patient is diagnosed, the more successful treatment can be in staving off the harsh effects of the disease and ensuring a full and active life.

In fact, many of us in the field have come to see Parkinson's disease in the same light as diabetes. Once a devastating disease that slowly killed its victims, diabetes is now a manageable chronic condition. The same is true with Parkinson's disease, which can be well managed with medications and remarkable surgical interventions.One of my patients, for instance, has been treated for the disease for more than 35 years. He drives, he plays tennis and he enjoys his life without tremors.
Still, I understand that diagnosis can be hard to take. Depression is common following a diagnosis, and many people delay coming into a neurologist's office for four or five years after they notice tremors and other symptoms.
I have patients who "diagnosed" themselves online after noticing that their handwriting had gotten smaller or that they were having trouble using a keyboard and a mouse. Instead of coming in right away, they develop significant anxiety, wallowing in the stigma of an outdated notion of Parkinson's disease, until symptoms are too pronounced to ignore.
When they do come in, we help them treat their depression and control their Parkinson's disease. With everything from diet and exercise to medication and neurosurgery, patients are often able to regain control of their motion and their lives.
Among the most well known surgical interventions is Deep Brain Stimulation, in which electrodes are implanted in certain areas of the brain to regulate abnormal activity. Every year, one of my DBS patients sends me videos of himself skiing, highlighting the fact that Parkinson's disease is not something that has to consume you.
At Pickup Family Neurosciences Institute at Hoag, we have also been treating patients with an innovative Dopamine pump, known as a Duopa. The pump allows us to control and fine-tune medication to the tiniest milligram to get the best therapy possible.
New research into the disease focuses on early diagnosis and even pre-diagnosis. In the same way that we now know what genes to look for to predict a high risk of breast cancer, researchers are well on their way to discovering clues that can predict a high risk of Parkinson's disease. Scientists are also working on a vaccine against alpha-synuclein, a protein associated with the disease.
While we are more than decade away from a vaccine, the treatments we have now and the hope we have for the future make it — I hope — less scary for people who think they might have Parkinson's to come in and get evaluated.
Parkinson's does not mean doom. And the earlier you are diagnosed, the more we can work together to help.
Dr. SANDEEP THAKKAR is a neurologist and movement disorder specialist at the Pickup Family Neurosciences Institute at Hoag. The hospital is hosting a free Parkinson's Disease Symposium & Medical Expo from 7:45 a.m. to 1 p.m. April 21 at the Arnold and Mabel Beckman Center in Irvine. To register, call (800) 400-4624.

http://www.latimes.com/socal/daily-pilot/opinion/tn-dpt-me-commentary-parkinsons-20180412-story.html

Thursday, April 12, 2018

Michael J.Fox Foundation Uses Parkinson’s Awareness Month to Promote Summer Events

 APRIL 12, 2018 BY CAROLINA HENRIQUES IN NEWS.


During Parkinson’s Awareness Month the Michael J. Fox Foundation (MJFF) wants to help those making summer plans turn their hobbies into a fundraiser for Parkinson’s diseaseresearch.
As part of the effort, the foundation has selected some of the best outdoors fundraisers taking place this year, including cycling, walking, running or swimming for Parkinson’s.
Anyone can register for a local event and help advance research toward a cure. There are options available for patients and their community to help the movement.
The foundation hosts an increasing number of Fox Trot 5K run/walks nationwide every year. This year, people can join the Orlando Fox Trot 5K run/walk on May 19 in Orlando, Florida, or the New York City Fox Trot 5K in Riverside Park, New York City, on Aug. 9.
If there is no 5K run/walk planned nearby, people may choose any race in their community and fundraise through Team Fox, or select other athletic and community-hosted eventsfeatured on the foundation’s website.
For those who prefer cycling, the Tour de Fox Cycling Series is back with two new events. Along with tour stops in Vancouver, British Columbia, Sonoma County, California, and Greenville, South Carolina, the tour will be heading to Southlake, Texas and Madison, New Jersey.
For those seeking an additional challenge, they can join a group of friends and meet in Denver, Colorado,  for Pedaling 4 Parkinson’s on June 16.
The largest independent Team Fox will be joining the 11th annual New England Parkinson’s Ride, in Old Orchard Beach, Maine, on Sept. 8. All events host rides of different difficulty and distances, so that everyone can participate.
For those who would like to add water sports to the fund-raising challenge, there will be an “Escape from Alcatraz Triathlon” where participants can swim, bike and run their way closer to a cure for Parkinson’s. On June 3, Team Fox also will join the event.
The initiative’s goal is to get communities involved and help advance critical research to find a cure for this life-debilitating disease.  For more information about the events or other opportunities to participate in Parkinson’s Awareness Month. Go to:
https://www.michaeljfox.org/get-involved/index.html?navid=get-involved
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https://parkinsonsnewstoday.com/2018/04/12/michael-j-fox-foundation-plans-summer-fun-raise-funds-parkinsons/

Michael J. Fox Foundation Offers Educational Tool to Boost Participation in Parkinson’s Clinical Studies

APRIL 12, 2018 BY JOSE MARQUES LOPES, PHD 


The Michael J. Fox Foundation for Parkinson’s Research (MJFF) has launched an educational suite called “Parkinson’s Clinical Trial Companion” to increase patients’ participation in clinical trials.
The new resource educates patients and families about the benefits of participating in research, and provides teams conducting clinical trials with high-quality tools to recruit and retain volunteers.
Lack of volunteers greatly limits clinical research, causing 85 percent of trials to face delays and 30 percent to never begin. Results from a 2014 survey of more than 1,500 Parkinson’spatients, caregivers and physicians showed that 81 percent of patients who see a movement disorder specialist would be likely or very likely to participate in a trial if there was one in their area.
“Patient participation in research is key to driving scientific breakthroughs and cures. Yet clinical trials routinely encounter roadblocks that slow progress, including a chronic shortage of volunteers,” Todd Sherer, PhD, CEO at MJFF, said in a press release.
“We believe it is our obligation to foster partnerships among patients, families and researchers to bring more people with the disease into Parkinson’s clinical trials by educating potential study participants and supporting trial teams’ recruitment efforts,” he added.
MJFF’s Parkinson’s Clinical Trial Companion is designed to holistically address challenges in clinical trial recruitment. The suite is partly educational for those with Parkinson’s disease and partly a resource for clinical trial teams, and is composed of two packs.
In the “Trial Participant Pack patients and families will have a 52-page guide called “Navigating Clinical Trials” to explain diverse aspects of clinical research, including trials’ phases, informed consent processes, genetic testing, studies on every disease stage, international research opportunities, as well as the role of family and caregivers to support participation.
The guide will be available in Spanish, French, German and Italian to serve as a global resource. It also contains personal stories and videos featuring patients, care partners and clinical trials’ scientists.
In the “Trial Resource Pack” research teams can find a best practices manual, which centers on participant experience to optimize clinical trial design. The manual builds on new technologies that recently have showed success in increasing patient awareness and willingness to participate in clinical trials, while also facilitating data collection.
The guide also has a downloadable toolkit containing 34 templates that can be customized to better present a study to the Parkinson’s community and successfully recruit and retain patients.

Connecting participants

“The task of recruiting and retaining study participants need not be overwhelming,” said Tanya Simuni, MD, chief of Movement Disorders in the Department of Neurology at Northwestern University Feinberg School of Medicine.
“Parkinson’s Clinical Trial Companion offers trial teams a step-by-step, patient-centered approach to support progress in Parkinson’s research through practical resources designed to help streamline participant enrollment and ensure that volunteers continue through to the trial’s end,” she said.
The tool adds to MJFF’s online platform Fox Trial Finder, launched in 2012, which connects Parkinson’s patients and other potential volunteers with clinical studies in their area, to ultimately boost trial enrollment process and increase patients’ involvement in the discovery of new treatments.
MJFF often hosts and participates in clinical trial fairs and other Parkinson’s events across the U.S. The foundation also is the sponsor of the online clinical study Fox Insight, and the Parkinson’s Progression Markers Initiative, which aims to spot and validate biomarkers of the disease.
“I am grateful to the researchers, neurologists and everyone in the Parkinson’s community for their contributions and dedication to the pursuit of a cure,” said Steve DeWitte, a member of the foundation’s Patient Council. “But there’s one thing patients must do ourselves: participate in clinical trials. By making the decision to get involved in research, we can help overcome a major roadblock on the path to a cure.”
As part of its ongoing mission to help find new therapies for Parkinson’s, MJFF recently announced a new $7 million funding program to support research and speed development of new therapeutic targets and biomarkers. Pre-proposals will be accepted through May. Funding is anticipated by November 2018.
Among the areas covered by the new funding are nonpharmacological interventions for gait and balance impairments, projects on brain circuitry and clinical experience of gait and balance problems, and research on the protein alpha-synuclein, the major component of Parkinson’s hallmark protein clumps, called Lewy bodies.
https://parkinsonsnewstoday.com/2018/04/12/educational-tool-aims-to-boost-participation-parkinsons-clinical-trials/

Scientists find excess mitochondrial iron, Huntington's disease link

April 11, 2018, University of Wyoming

University of Wyoming Professor Jonathan Fox, in the Department of Veterinary Sciences, leads research that has found a link between excess mitochondrial iron and Huntington's disease. Credit: University of Wyoming


Scientists at the University of Wyoming have found that mice engineered to have Huntington's disease (HD) have an over-accumulation of iron in their mitochondria.

The research identifying a pathway for the neurodegenerative disease also has relevance to understanding related disorders such as Parkinson's disease, Alzheimer's and Lou Gehrig's disease, says Jonathan Fox, a professor in UW's Department of Veterinary Sciences.
The article, "Brain mitochondrial iron accumulates in Huntington's disease, mediates mitochondrial dysfunction, and can be removed pharmacologically," was published online in the journal Free Radical Biology and Medicine.
Others involved in the research were postdoctoral scientist Sonal Agrawal, in the Fox laboratory in the UW College of Agriculture and Natural Resources, and Baskaran Thyagarajan, an associate professor in the School of Pharmacy.
HD is an inherited genetic disorder that causes neurons to die in brain areas important for movement and cognition. Symptoms become progressively worse and include involuntary movements, changes in behaviors and cognitive decline, Fox says. There are no treatments that delay disease progression.
The Fox team experimented with a drug that crossed the mitochondrial membrane and removed , or it may bind with the iron and make it nontoxic.
Mitochondria are the key site of energy production and also have many other functions critical for cell health and survival, says Fox, who participates in the Neuroscience Program at UW.
Mitochondria are a main site of oxygen use in cells. The Fox lab members collaborated with Thyagarajan, who has expertise in evaluating mitochondrial functions, to measure oxygen consumption in mouse HD mitochondria. They found oxygen deficits in HD mitochondria with unusual amounts of iron. The research suggests iron accumulation in mitochondria interferes with respiration and oxygen uptake, and that this may contribute to neuronal malfunction and death.
Excess iron in cells can be detrimental, but adequate iron supplies also are essential to many cell functions.
"A wide variety of different proteins require iron," says Fox, who also teaches in UW's Wyoming, Washington, Alaska, Montana and Idaho (WWAMI) medical program. "Probably the best known is hemoglobin. The protein requires iron to transport oxygen properly. Iron metabolism is central for normal cell function."

The flip side is that too much can be toxic. Cells are challenged to provide iron for functions that require it but also prevent toxic accumulations.
"In HD, we think that normal iron metabolism is disrupted, and these adverse effects of iron are allowed to continue," Fox says.
He says, however, that this pathway is not the only factor that drives HD.
"There are many other pathways that have been shown to be important," he says. "We're saying this is an important part of the picture."
Fox says the research helps lay the foundation for developing drug therapies.
Fox's research involves studying mainly mouse models of HD; however, the researchers also obtain human brain tissue collected at autopsies and supplied by a National Institutes of Health-supported brain bank.
"Mouse HD models are great for studying the human disease but are not perfect," he says. "Whenever possible, we try to verify the findings in animal models are actually present in the human condition. We were fortunate enough to obtain human brain tissue and show similar changes to the HD mice in the current study."
The scientists also are interested in environmental factors that can affect HD. Their latest paper adds to previous work showing high iron intake by HD mice early in life promotes the disease in adulthood.
Still, he says the researchers in his lab are interested in pursuing two areas.
They want to further understand the mechanisms by which iron causes mitochondria dysfunction in HD. The other, broader aspect is that HD is part of a group of related diseases, and "while they don't have identical mechanisms, they do have some important features in common," he says.
"So, we are interested in determining if mitochondrial  accumulation occurs in models of Parkinson's, Alzheimer's and brain aging. We are interested in expanding beyond HD mouse models," he says.
More information: Sonal Agrawal et al, Brain mitochondrial iron accumulates in Huntington's disease, mediates mitochondrial dysfunction, and can be removed pharmacologically, Free Radical Biology and Medicine (2018). DOI: 10.1016/j.freeradbiomed.2018.04.002
Provided by: University of Wyoming
https://medicalxpress.com/news/2018-04-scientists-excess-mitochondrial-iron-huntington.html

Just one night of bad sleep increases Alzheimer's protein

April 12, 2018  By 

If you think that a bad night's sleep is harmless, think again. New research suggests that a single night of sleep deprivation can increase levels of a protein involved in Alzheimer's disease.

Scientists from the National Institute on Alcohol Abuse and Alcoholism (NIAAA) discovered that adults who experienced one single night of sleep deprivation showed an immediate increase in levels of beta-amyloid.
Beta-amyloid — also known as amyloid beta — is a sticky protein that can accumulate between brain cells and form "plaques." These plaques disrupt brain cell communication, and this is believed to play a key role in Alzheimer's disease.
Study co-author Nora D. Volkow, of the Laboratory of Neuroimaging at the NIAAA, and colleagues recently published their findings in the Proceedings of the National Academy of Sciences.
Alzheimer's disease is a progressive cognitive disorder characterized by memory loss and changes in behavior. It is the most common form of dementia, affecting around 5.7 million adults in the United States alone.
Past research has associated disrupted sleep with an increase in beta-amyloid levels, but Volkow and colleagues note that there have been some shortfalls in research.
"Despite the evidence," say the researchers, "that acute sleep deprivation elevates [beta]-amyloid levels in mouse interstitial fluid and in human cerebrospinal fluid, not much is known about the impact of sleep deprivation on [beta]-amyloid burden in the human brain."

A bad night's sleep increases beta-amyloid

To help shed light on how acute sleep deprivation influences brain levels of beta-amyloid, the team studied 20 healthy adults aged 22–72.
Using positron emission tomography imaging, the researchers measured beta-amyloid burden in the brain after one night of rested sleep and after one night of sleep deprivation.
After a single night of sleep deprivation, the researchers noticed an increase in beta-amyloid levels in the right hippocampus of the subjects' brains, as well as in the thalamus.
The hippocampus is the brain region associated with long-term memory, and the thalamus is a brain region involved in processing sensory information.
According to the authors, these findings provide "preliminary evidence for the role of SD [sleep deprivation] on [beta-amyloid] accumulation in the human brain."
Volkow and her colleagues note that they are unable to say whether a night of rested sleep could negate the accumulation of beta-amyloid caused by a bad night's sleep, but this is something that they plan to investigate in future research.
Still, they believe that their new study suggests that getting a good night's sleep may be crucial to our brain health. The authors conclude:
"
Our results highlight the relevance of good sleep hygiene for proper brain function and as a potential target for prevention of AD [Alzheimer's disease]."
https://www.medicalnewstoday.com/articles/321463.php?utm_source=newsletter&utm_medium=email&utm_country=US&utm_hcp=no&utm_campaign=MNT%20Daily%20Full%20%28non-HCP%20US%29%20-%20OLD%20STYLE%202018-04-12&utm_term=MNT%20Daily%20News%20%28non-HCP%20US%29 

Parkinson's disease: Challenge for aging population

April 12, 2018



New Delhi: It is estimated that about 30 million people in India suffer from various forms of neurological diseases and the average prevalence rate is as high as 2,394 patients per 1,00,000 of the population.
Yet, the awareness about various forms of neurological disorders is abysmally low here and people suffering from these often end up being ridiculed and stigmatised.
Due to lack of awareness and understanding, neurological disorders are often subject to various taboos, which heavily impact the lives of patients, hindering the treatment and in some cases even aggravating the problem.
"There is a serious lack of awareness about Parkinson's disease or its management in India. Caused by progressive damage to parts of brain over many years, the disease shows symptoms of involuntary shaking of body parts of the body, slowing movement, and stiffness in muscles. People suffering from Parkinson's disease also experience depression and anxiety, have the sense of losing balance, memory, and sleep. It remains the second most common neurodegenerative disorder and most common movement disorder, and its onset usually is on people older than 60 years of age," said Dr. Satwant Sachdeva, Consultant Neurologist, Columbia Asia Hospital, Patiala.
According to a recent study, the number of deaths due to neurological disorders increased by 36.7 per cent worldwide between 1990 and 2015. A report published in The Lancet in 2015 by the Global Burden of Disease (GBD) project, claimed that neurological diseases comprised 16.8 per cent of global deaths.
On the occasion of World Parkinson's Day, Dr Vinit Suri, Senior Consultant, Neurology, Indraprastha Apollo Hospitals highlights some taboos often encountered by neurologists while treating patients.
-The taboo of insanity- This is the most commonly associated taboo with people who suffer from neurological disorders. Due to lack of awareness, people often label patients suffering from Alzheimer's as 'senile' and those who have epilepsy as 'crazy'. It is not unusual to see people with neurological disorders being referred to psychiatrists to 'cure' their insanity.
-The taboo of a weak mind- People generally assume that neurological disorders are the result of a weaker mind. That someone with epilepsy or Parkinson's will have less IQ than an average person, is also a myth present in our society. Children suffering from epilepsy are often treated differently from their peers, and even as adults.
-The taboo of superstition - Illiteracy in India is high, due to which superstitions flourish in many parts of our country, especially the rural areas. Many a times, neurological diseases like epilepsy are associated with demonic possessions. To treat the so-called demonic possessions, the patients are put through some horrendous conditions and even physically mutilated in some instances. This again is propagated due to a lack of awareness and good quality education.
-The taboo of treatment- Irrespective of the disease, a neurological disorder is perceived as untreatable. This belief is prevalent even in urban areas. Many a times, when a patient is diagnosed with a neuro-disease, he/she automatically assumes that it would be a life-long burden and there can be no cure. With the advancement in medical sciences, many therapies have worked wonderfully to cure the disorders, or at least significantly reduce their impact.
-The taboo of association- Due to all the negative connotations attached to neurological disorders, people tend to stigmatise any form of association with patients suffering from these diseases. This can lead to great suffering in the social and personal lives of these patients. It is not unusual for marriages to break and children to abandon their parents in old age, to avoid bearing the brunt of taking care of these patients.
http://health.einnews.com/article/441634356/OrvB795bDzR_d0YS

Alexandria woman: Parkinson's brought out my creative side

ByTara Fitzpatrick    April 12, 2018

Sandra Quigley shared her story as part of Parkinson's Awareness Day.

Sandra Quigley for World Parkinson's Day
Sandra Quigley, from Alexandria, realised she had Parkinson’s before she went to the doctor.
“It wasn’t a shock because I suspected it,” she said. “I had started to notice the shaking in my arm and then one night it started to shake all by itself and that’s when I realised this was something more.”owever, she was surprised when the condition, which she was diagnosed with between 2005 and 2006, brought out a creative talent she didn’t know existed.
In the years following her diagnosis, Sandra’s love, and talent, for painting and photography has grown. She is now the secretary for a local arts group and has even held an exhibition.
She said: “I never imagined I could actually draw like that. I would say that Parkinson’s brought it out in me. It certainly gave me the time and the motivation to explore any artistic talent that I did have.
“I’m forever showing everyone what I’ve done.
“There is a strong link between Parkinson’s and creativity.
“Some people get very musical, some people write loads. You see something and you want to do something with it.
“I started drawing and painting and making things. It’s great fun.”

Ahead of World Parkinson’s Day, on Wednesday, Sandra, 64, opened up to the Lennox Herald about the condition which affects more than 12,000 people in Scotland and said she has never let the disease hold her back.
“I think as you travel through life you get lots of blows and shocks,” she said. “It’s not something I had seen on the horizon so I was asking myself questions like how did this happen to me? But you’ve just got to get on with it.
“Parkinson’s is a movement disorder and it affects you from the minute you wake up to the minute you go to bed.
“It’s like a constant struggle, a constant battle to move sometimes.
“The medicine keeps the lid on it but it can be quite unpredictable. You can go through spells. Sometimes you’re not sure if your walking will start to get dodgy that day.
“You can stagger a bit and people can think you are drunk.”
Sandra lives in Alexandria with husband Allan, 64. She is mum to three grown-up children Clare, Emma and David and has three grandchildren.
She said many people still lack an awareness about Parkinson’s, a degenerative neurological condition, for which there currently is no cure.
“I think the misconception is that it’s an old person’s disease. Young people have it. It doesn’t matter whether you are male, female, young or old.
“I think people themselves are not really aware of what Parkinson’s is.
“It’s quite understandable because it varies from person to person. Some of my friends think going up and down stairs is difficult, others think I have to sit in a soft seat. They all have their own interpretation. It can be difficult to explain it to people.
“It can be like putting your hand in a rubber glove and then trying to do up a button. You are so clumsy.
“It’s a battle every day but exercise and attitude are important.
“The more you think about it the worse it gets and the more it affects your life.
“So if you don’t let it stop you doing things then the less effect it will have on you. You just get on with it.
“I do not ever give up on being able to do things.”
Sandra is retired and formerly worked as a manager for West Dunbartonshire Community Planning Partnership before doing freelance administration.
However, determined to prevent her Parkinson’s from holding her back, she decided to turn her attention to a hobby she had always thought of pursuing.
“I thought, you know, things are not going to get any better because this is a progressive illness. If there is something I want to do, now is the time to do it.
“So I packed the administration in and went on to do artwork.”
Sandra joined the Vale of Leven Mature Arts Group, run by community organiser Ivor Jackson.
“I always wanted to do art,” she explained.
“When the kids were wee I went back to school and sat at the back of the classroom and sat my Higher art - that was about 30 odd years ago.
“I just basically paint what I like. At the group we support each other because everyone has different skills and different talents.
“I use paint, pastels, wax, pencil. I’m learning how to tape down paper when using watercolour and how to mount my work.
“I draw from pictures. It can be therapeutic. I find that if I have my tremor and I’m drawing, the tremor can disappear because you are so focused.
“I would be really interested to know if there are any others in the community who have Parkinson’s and are doing artwork.”
Sandra sold some of her work in an exhibition at St Kessog’s Church Hall last year, but says she mostly makes her artwork for the love of it.
“I don’t actually put my work into big galleries or anything like that, but it’s always a thought, “ she said.
“At the moment I’ve been working on some Scottish scenes and I do a bit of photography as well because I was looking for things to paint.
“I took a photograph just last week of the sunset over the hill outside of our window and I sent it into Weather Watchers and they ended up using it on the BBC. I was well chuffed.”
Sandra attends a Parkinson’s UK group held in Helensburgh Church Hall and goes to the Queen Elizabeth University Hospital in Glasgow every six months for checks.
“I wouldn’t say you ever get used to it,” she said. “But after 12 years you know what you’ve got to deal with everyday.
“The biggest thing is not being able to do things the way you would like, when you would like.
“It’s okay when the medicine kicks in. You’ve got to take it very regularly and take it at very specific times.
“Obviously everyone’s Parkinson’s is different so their medication and their timings are different but you have to get used to living with pills. It’s like your purse, your lipstick and your pills.
“Funnily enough one of the girls I worked with has been diagnosed as well and she just stays up in Bonhill so we are very friendly. We keep in touch and compare shakes.”
To find out more information about Parkinson’s UK visit www.parkinsons.org.uk or call the free, confidential helpline on 0808 800 0303.
https://www.dailyrecord.co.uk/news/local-news/alexandria-woman-parkinsons-brought-out-12351302