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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, June 17, 2017

The dogs that saved me

By:  - Desk Editor    
June 18, 2017

He has 21 dogs, some of them strays he had rescued. Caring for them is payback for the two instances when canines proved to be his lifesaver, says this former fitness trainer

PLAYTIME Lakandula plays with his dogs at his home in DasmariƱas, Cavite. —PHOTOS BY RICHARD A. REYES



People who see his social media posts marvel at how Jerry Lakandula manages to walk more than 10 dogs of varying breeds at the same time without them snapping at each other or getting their leash all tangled up. It’s easy to imagine him the stern paterfamilias out to save an unruly brood from their undisciplined selves.

But in fact, it is his dogs that saved Lakandula’s life. Twice.

“I had a difficult childhood,” the 44-year-old former fitness trainer recalled, adding that his mother had left him with his grandmother in Manila when he was young.

But while the old woman was good to him, other members of the family were not. To punish him for his misdeeds, they would lock him up in a room where the dogs were kept.
“They would lick my tears when I cried,” he said. “At that time, I thought they were just being affectionate. It was only later when I realized that dogs like the salty taste of tears,” he added with a laugh.
Such close company helped Lakandula develop a strong bond with dogs that would later prove to be a lifesaver.

Parkinson’s
Diagnosed with Parkinson’s disease five years ago while he and his wife were working in Kuwait, he had thought of ending his life.“I fell into depression,” Lakandula confessed.

The thought of not being able to control his movements devastated him because they were required of his job as a physical trainer and fitness consultant.
Parkinson’s is a neurodegenerative brain disorder that results in the brain slowing down in its production of a neurotransmitter called dopamine.
With less and less dopamine, people lose their ability to regulate movements and emotions.

WALKING THE DOGS No sweat, Lakandula says of walking half a dozen dogs on his bike.


Fortunately, Lakandula came across dog expert Cesar Millan’s “The Dog Whisperer” program. “I watched his videos and read his books over and over,” he said.
“I applied everything I’ve learned. That was how I became a dog behaviorist,” he added.The former fitness trainer met Millan in one of the dog expert’s visits in Asia a few years ago.

Lakandula’s current “dog days” was a sharp departure from his life as a certified personal trainer and bodybuilder who used to compete at Kuwaiti bodybuilding shows in the mid to the late ’90s and had celebrity high-end clients.
He once gave a fitness lesson to former UK Prime Minister Tony Blair, he said in an interview with Petr Svab of The Epoch Times.

But the good life had a price, he told Svab. Despite the money, the new car, signature clothing and the latest gadgets, Lakandula started having health
 problems—insomnia, tremors.

One time, he almost had a stroke. Five years ago, when he was 39, he was diagnosed with Parkinson’s. Gradually, he started losing control over his body and emotions to the point that he contemplated suicide.

Redemption
But his dogs proved to be his redemption.  “When I’m with a dog, I live in the moment. I don’t think of the future, I don’t think of the past, and I act instinctively,” he told Epoch Times.It’s a state of mind and body that he has learned to master over time.

Today, Lakandula and his family take care of 21 dogs in their home in DasmariƱas, Cavite. Most of the pooches of various breeds were adopted, while a few were surrendered to them by pet owners.

His affinity with dogs has given him enough occasion to practice one of Millan’s teachings: “Dogs respond to unbalanced energy in one of three ways: fight, flight or avoidance.”

“I can’t be stressed because dogs can sense it,” he said.
“It would be difficult for me to ‘control’ them if my mind is not at peace,” he added.
A research by the University of California Los Angeles on animal-assisted therapy showed that “anxiety scores dropped 24 percent for participants who received a visit from the volunteer-dog team.”
The researchers also found that dogs help in lowering the levels of stress hormone epinephrine.

WATER BABIES Lakandula shares bath time with his pooches at home.

Stress management
“Dogs help me in stress management,” Lakandula said.
The more he learns about dog behavior, the more he gets to know about himself, said this self-taught dog behaviorist.

He used to be ill-tempered during his younger years, but is now the exact opposite, he said, adding that he won’t allow Parkinson’s disease to prevent him from doing the things he used to do, at least for now.

In fact, he’s looking for funding to be able to attend a training that Millan will conduct in September in California so he can be better at helping owners deal with their dogs’ errant behaviors.For now, he continues his routine: walking his 21 dogs before the sun rises and late in the afternoon.

It helps that his family’s support for this newfound love knows no bounds. They had renovated their home to fit the needs of his dogs, to the extent that their lawn had been replaced with concrete flooring to serve as training ground for the canines.
Even his youngest daughter, now 21, decided to shift from education to physiotherapy so she could help her father manage his Parkinson’s disease.

Explaining the changes around him, Lakandula said, maybe in jest: “I train dogs and humans.”

But would dogs be easier to train? one asked.
“Ay, sinabi mo (You bet),” said this Filipino pack leader.

http://newsinfo.inquirer.net/906474/the-dogs-that-saved-me

Seniors With Parkinson's Disease Hit the Stage

By: Sara McCloskey
June 17, 2017




Montpelier, Vermont - It's almost curtain call for a group of Vermont seniors putting on a show about what they do every day.
There's a twist to their performance. All of the performers are living with Parkinson's Disease.

Some of the members of the Montpelier Senior Activity Center are getting ready for a big performance Saturday.

"The whole show is framed around Parkinson's," said Rob Mermin who has been teaching classes to people who have Parkinson's, a disorder that frequently causes loss of motor skills.

Rob is the founder of Circus Smirkus. He himself was diagnosed with Parkinson's 3 years ago. He performs and teaches pantomime to others.

"In mime training, we become aware of every single movement," Rob said. "I think that's what people with Parkinson's need to do, is become more aware of how they're moving incorrectly."

On Saturday the Parkinson's performance troupe will be taking the stage at the Unadilla Theater in Calais. 

They'll do skits, juggling acts but also talk with the audience about their disorder.

"We aim to educate the audience about what it's like to have Parkinson's disease," Rob said. 

Duncan Wilkie is one of the performers and he admits he's a little shy of the stage. 

"I'm intimated," Duncan said laughing, with his wife, Suzie, by his side in their Montpelier home. "I've never performed on stage, I'm not an actor." 

An avid member of the green mountain club, hiking most of the long trail and Appalachian trail with his friends, Duncan realized something was wrong about four years ago.

"I'd be in downtown Montpelier and my foot would drag, going across the street," Duncan said.

Suzie says she also noticed some changes in Duncan's step and speech.

Duncan has been doing better lately in part from his medications but also from the classes at the senior center.

"I pretend that there's a wall there. It's a hard time to get my hand to flatten out, " Duncan said, as he moved his hand the way Rob taught him in class. 

Suzie says her husband is becoming confident again. "He's really learning to focus on his movement."

With curtain call being just a day away, the Wilkie's hope the audience realizes Parkinson's is just part of life. It doesn't stop you from living.

"It's a new normal, that you live your life in different ways," Suzie said. "But you can still have vibrancy, you can still have fun and companionship, you can still go places, you can do things."



The Parkinson's Performance Troupe's show will be at 6 p.m. Saturday. It's free to attend and there will be a talk back with the audience. 
Video:
http://www.mychamplainvalley.com/news/seniors-with-parkinsons-disease-hit-the-stage/743738808

Teenager designs app to help with dementia

June 17, 2017    Jennifer O'Brien Ireland Reporter


Young coders from around the world will converge on Dublin this weekend to show off their design ideas

A digital memory box designed by a teenager to help people with dementia to recognise their families and remind them to take medication goes on show at a conference for young coders this weekend.

The Patients’ Assistance App, devised by Katie Kilroy, 17, from Dublin, will be one of the projects at the CoderDojo Coolest project event at the RDS today and tomorrow.

The app was inspired by Ms Kilroy’s experience with her grandmother, who had dementia, and was designed with her friend Ciara Leacy.
“Ciara and I want to change how dementia sufferers live their lives. With the help of this app we are planning to connect carers and patients,” she said.
“The app has a memory box section with pictures of the patient’s family and past. The idea originated from my desire to help my granny. She had dementia and we felt that if there was an app for her that was easy to use, it would not only help her and other sufferers, but it would help the families.”

The app also has reminder alerts to help people to remember when to take their medication and any other daily tasks.

A program designed by two 11-year-olds to make hospital less scary for children their age will also feature this weekend. Anna Farragher and Eva McAndrew from Tuam, Co Galway, created Hospital Holly, which tells children what to expect if they are admitted to hospital.

It consists of a website, app and doll, which all contain information about different procedures, such as blood tests and x-rays.

“One of our friends has to go to hospital a lot and have lots of scary things done so we decided we would make an app and make dolls to go with it,” Anna said.
“We would love to learn how to grow this into a business as all our research to date with different doctors and nurses has shown a huge market for this product. When we grow up I’d like to work with Google.”

CoderDojo is a volunteer-led computer programming club for children that was established in Cork in 2011 and now has 100,000 members across the globe. The Irish programmer James Whelton and the entrepreneur Bill Liao wanted to create a space in which children could learn code in a social environment.

The young coders or “ninjas” aged from 7 to 17 are travelling to Ireland from 18 countries, including Argentina, Serbia, Bulgaria, Japan, the United States and Australia, to exhibit their projects.

Noel King, co-founder and chairman of CoderDojo Coolest Projects, said that the rise in standard of project entries each year was something that continued to astound him. “It’s inspiring and humbling, working in technology and seeing young people who are 12 or 13 passionate about tech and creating real projects,” he said.

“In the next year and going forward, we are going to look at launching these projects properly in the marketplace. CoderDojo has provided an excellent foundation for Ireland in terms of coding, and what the kids really relate to is the creative side as a lot of their subjects in school don’t have that level of creativity.”

The RDS arena will be divided into three areas including a Smart City, which will provided an interactive space, a Steam (science, technology, engineering, arts and maths) Experience with interactive exhibits and speakers and a games arena.

Richard Bruton, the education minister, has said that coding is a subject that should be taught in primary schools here. “I am acutely conscious that we need to give all children the best start in a world where such skills will be key to participation and success,” he said. “I would hope that it is possible to use some of the learnings of the CoderDojo project and similar initiatives in considering approaches to integrating coding into the primary curriculum.”

https://www.thetimes.co.uk/article/teenager-designs-app-to-help-with-dementia-g2v92snbh

Coping with psychosis from Parkinson’s disease takes support

June 17, 2017



FALLBROOK – The Fallbrook Parkinson’s Support Group will hold their monthly meeting, Friday, June 23 from 10 a.m. to noon. The meeting will be held in the fellowship hall of Christ the King Lutheran Church, 1620 S. Stage Coach Lane. Meetings are held the fourth Friday of each month.
This month’s topic, Parkinson’s psychosis, will focus on “What to look for, and what can be done to cope?”
Lisa Stinchcomb with ACADIA Pharmaceuticals, a San Diego-based biopharmaceutical innovator, will discuss what to look for and what can be done to cope with this aspect of Parkinson’s disease. She will also share information about new drug therapy recently approved and released by the U.S. Food and Drug Administration.
Prior to the program, there will be a time for sharing, coffee and refreshments. The meeting is held in support of people with Parkinson’s disease, care partners and people interested in improving the world of those affected by Parkinson’s disease.
For more information, call Irene at (760) 731-0171, Rodger at (760) 470-9133 or Linda at (760) 728-4604.
http://villagenews.com/uncategorized/coping-psychosis-parkinsons-disease-takes-support/

Friday, June 16, 2017

FDA Reviewing ADS-5102, Possible 1st Treatment for Levodopa-induced Dyskinesia in Parkinson’s

JUNE 16, 2017 BY JOANA FERNANDES, PHD



Treatment with ADS-5102 (amantadine) significantly decreased levodopa-induced dyskinesia and off-time episodes in patients with Parkinson’s disease at three months, and maintained those benefits for another three months, according to results of a Phase 3  clinical trial that may prove pivotal in the medicine’s approval.
Adamas Pharmaceuticals, the treatment’s developer, has filed a New Drug Application for the use of ADS-5102 extended-release capsules to treat levodopa-induced dyskinesia — jerky and involuntary movements — in Parkinson’s patients. The U.S. Food and Drug Administration (FDA) has taken it under review and set Aug. 24 as a possible decision date. If approved, ADS-5102 will be the first treatment available for dyskinesia resulting from levodopa, a first-line treatment for the disease.
“ADS-5102 reduced the duration, severity, and impact of dyskinesia in people with Parkinson’s disease,” Rajesh Pahwa, MD and study’s first author, said in a news release. “These statistically significant reductions were maintained for the entirety of the six-month EASE LID study.”
“Also meaningful is that ADS-5102 significantly reduced off time in the study,” Pahwa said. “To my knowledge, ADS-5102 is the first and only drug with clinically demonstrated reductions in both dyskinesia and off time, conditions which impact physicians’ ability to treat underlying Parkinson’s disease in dyskinetic patients.”
The EASE LID study investigated the effects of once daily ADS-5102 in patients with levodopa-induced dyskinesia, compared to placebo. The drug is taken at bedtime, which helps maintain its levels during morning and waking hours, when dyskinesia usually occurs, improving the drug’s benefit-risk profile.
Results showed that after 12 weeks of treatment, patients given ADS-5102 had a significant decrease in dyskinesia compared to those who received a placebo, as measured by the Unified Dyskinesia Rating Scale (UDysRS), meeting the study’s primary endpoint. Scores on that scale improved by about 30 percent among treated patients. Differences between the two groups remained significant at 24 weeks.
ADS-5102 also induced a significant increase in on time without dyskinesia, about a 40 percent improvement, and a significant decrease of about 45 percent in off time, pooled data at 12 weeks of treatment showed. Off time describes the period when the effects of Parkinson’s medication wears off, and patients experience more Parkinson’s-related symptoms.
The most common side effects include dry mouth, dizziness, peripheral edema, falls, constipation, nausea, anxiety, decreased appetite, and insomnia. In total, 17 patients abandoned the study, 13 of whom were receiving ADS-5102.
“ADS-5102, if approved, will be an important advancement in the treatment of Parkinson’s disease,” said Stanley Fahn, MD, a professor of Neurology at Columbia University. “Many people with Parkinson’s have levodopa-induced dyskinesias, and these can be troublesome and impact their quality of life.”
Levodopa replaces lost dopamine in the brain and is an effective Parkinson’s treatment, but greater doses are needed to maintain efficacy over time and levodopa-induced dyskinesia is a common side effect.
https://parkinsonsnewstoday.com/2017/06/16/phase-3-trial-of-ads-5102-treatment-for-levodopa-induced-dyskinesia-in-parkinsons-positive-fda-review-starts/

FoxFeed Blog: A Passion for Fashion -- and Fundraising

Posted by  Laura Amann,  
While many who join Team Fox run marathons and scale peaks to raise funds for Parkinson’s research, other members across the globe find imaginative, resourceful ways to turn their passions into opportunities to help advance a cure.
Husband and wife team Tonya and Chad Walker are two such Team Fox members. Together, they’ve created events that tie together Tonya’s love for fashion with education about the need for a cure for Parkinson’s disease (PD) – and have raised $35,000 for The Michael J. Fox Foundation (MJFF) in less than three years.
But they weren’t always so involved. Tonya was only 34 when she was diagnosed. Like many with young-onset Parkinson’s disease, at first she lived in secrecy. But after five years of living with PD, her symptoms and treatment evolved -- and so did her outlook. The Orlando, Florida-based couple went from complete denial to total immersion.
They began with a blog. And today, their online endeavor, The Shoe Maven, focuses on footwear and fashion but ties everything back to life with Parkinson’s and MJFF.
Tonya and Chad then brought this passion back offline, founding the Art of Fashion Show, featuring styles from local boutiques and hosted by a local art gallery. The event became such a success that it’s now held annually -- raising $7,000 this spring for MJFF’s programs to speed a cure.
Additional collaborations followed. Their hometown Bloomingdales signed up as a partner for their “Heels On Heads Up” social media campaign, which combined insights about living with PD with some stylish shoes. The store then hosted an MJFF benefit and a two-week curated pop-up shop. The Walkers also formed a second partnership with Lilly Pulitzer, where Tonya flew to New York to style outfits, shoot some looks and roll out their Shop and Share event for Team Fox.
As relative newcomers to the fundraising game, Tonya and Chad share their advice for anyone looking for innovative ways to take part: Start small and tie your fundraising into something you love -- be that biking, cooking, gardening or anything else. And always network.
“We talk with others about our work with MJFF all the time,” says Chad. “I’m amazed at how many times it turns into a discussion about someone the other person knows. When you share, you suddenly find connections.”
This fall, Tonya will be kicking off her heels and strapping on running shoes when she and Chad participate in the 2017 TCS New York City Marathon -- another first for the couple. And they love sharing their commitment to a cure with their fellow Team Fox members and supporters. “Doing this work, living with Parkinson’s, I can honestly say it’s made me a better person,” says Tonya. “So many people are making an incredible difference.”
Interested in transforming your personal passion into an opportunity to speed a cure? Join Team Fox today.
______
Laura Amann is an award-winning freelance writer who contributes personal stories about living with Parkinson's to the MJFF blog
https://www.michaeljfox.org/foundation/news-detail.php?passion-for-fashion-and-fundraising

Honours List: How Sir Billy Connolly finally joined the establishment

June 16, 2017






Not much was off-limits to Billy Connolly, and certainly not his own health.

When he was diagnosed with Parkinson’s Disease, he chose to mock his symptoms on stage by playing Whole Lotta Shakin’ Goin On.
A generation earlier, it was his audiences that had been shaking, at the sheer outrageousness of his expletive-laden comedy. In an age when comics still dressed up to go on stage, he dressed down. He told stories, not jokes, and brought a folk music sensibility, not to mention a hard Glaswegian edge, to his humour.
It was an act that set the scene for the generation of alternative comics that followed, and nearly all cited him as an influence. Peter Kay described seeing Connolly perform as his “comedy epiphany”, comparable to seeing The Beatles on The Ed Sullivan Show.
Connolly, who also enjoyed a late-flowering career as a movie star, had in 2010 been given the highest honour Glasgow could bestow upon him - the Freedom of the city.
He disclosed in 2013 that he had been diagnosed with Parkinson’s and prostate cancer on the same day, but has since been given the all-clear from cancer.
http://www.yorkshirepost.co.uk/news/honours-list-how-sir-billy-connolly-finally-joined-the-establishment-1-8601403

59 marathons ago, Rhonda-Lee Foulds was diagnosed with Parkinson's disease

June 16, 2017

Tina Pearson (left) helps Rhonda-Lee Foulds work out at a Camp Gladiator session in Roanoke. Foulds, who has completed 59 marathons, fights her diagnosis of Parkinson's disease with daily exercise.    

(Ron Baselice/Staff Photographer)


Rhonda-Lee Foulds was 36, a runner and the mother of three active little boys when she was diagnosed with Parkinson's disease in 1999. She underwent brain surgery, stopped running, gained weight and took 25 pills a day.

"I went from being very active to not being active at all," Foulds, who lives in Justin, told us when we wrote about her in 2011 before her first marathon. "I had an electric wheelchair and had resigned myself to that's how it was going to be."

Ah, but fate has a way of rolling its eyes when we get out our crystal balls and think we can predict our future. How could Foulds, now 53, ever dream that by 2017, she'd have completed 59 marathons and ultra marathons (six 50Ks, or 31 milers, to be precise) and be training for No. 60?

All she knew is that there must be a better way than pills to control her symptoms. 

Typical week of workouts

I am a member of Camp Gladiator in the Roanoke/Justin area. Every week, I participate in three to four of their workouts, which consist of group fitness and working together as a team. I also run anywhere from 35 to 60 miles per week.

If I had just 20 minutes to work out, I would
Definitely run!

What gets in the way of my exercise? 
My biggest hindrance is extreme fatigue due to advanced Parkinson's.

Proudest fitness moment
I ran a quad (four marathons in four days) over the Thanksgiving holiday weekend last November. Each of the marathons ended up being very close in finish time.

Fitness goals
My fitness goal is to stay ahead of my illness with planned, difficult exercise six of seven days per week.

I also have my first 50-mile race scheduled for Aug. 19. It's called Lean Horse and is in Deadwood, S.D. If I make it successfully through the 50-miler, I will consider a 100-miler.

Three things you'll always find in my refrigerator
Fruit, yogurt, protein drinks.

Favorite healthy food
 Watermelon.

Favorite indulgence
Chocolate.

What I'd tell someone who wants to follow my routine: 
Take it slowly and, as far as running, start with a program like Couch to 5Kand stick to it like glue. You'll find your endurance getting better and better if you choose to run long distances or run faster. Also, find a group like Camp Gladiator. They make it easier to get fit because you gain lots of friends who also enjoy working out.

What my workout says about me
My workout says I am determined to stay healthy regardless of my diagnosis. I always say that people are capable of so much more than they think they are. That's definitely my situation, as I used to think I should just sit around and wait to wither and die. 


Video:
https://www.dallasnews.com/life/healthy-living/2017/06/16/59-marathons-ago-rhonda-lee-foulds-diagnosed-parkinsons-disease