Better visual, video skills can lead to earlier, more accurate movement disorder diagnoses

Because there is no definitive blood test or brain scan to confirm a diagnosis of movement disorders like Parkinson’s disease, neurologists rely on visual examination to diagnose and track these diseases. Researchers say that even better operate a video camera can make a big difference in the early diagnosis of movement disorders.

Source:: Science Daily

A few months ago, I had a surprise reunion with Babbette in the neighborhood's Ross Dress For Less clothing store scouting for Speedo markdowns.

We had met years ago, as swim junkies at our local Y. And over time, our locker room banter fostered a guise of intimacy. Though we were veritable strangers, we shed our vulnerabilities and established a trust that our secrets be honored, and privacy respected.

In truth, we were in part keepers of one another's stories in a profound yet superficial way. This female assembly was a safe refuge for sharing rites of passage, milestones, journeys, gibberish and simple tales of life on Planet Earth. Yet, I never revealed my diagnosis of Parkinson's disease (PD) to her.

But as I rummaged through the wasteland of discount swimsuits, I was caught off guard in an awkward moment. I realize that Babette, a paragon of dignity and grace, held a three-pronged cane for balance. I instinctively braced myself for the fate she'd soon reveal.

Coming closer, moving into my space, as was characteristic of Babbette's engagement, she blurted out her secret.

"I was diagnosed four years ago with MS (multiple sclerosis). I, for a period of time, was in a wheel chair; this walking stick enables me to negotiate these merchandise-strewn aisles more easily and gives me options, mobility and independence."

I cringed. I felt trapped. And after 15 more minutes, I was feeling warm, claustrophobic and dizzy.

But perhaps more troubling than my involuntary detainment was Babbette's abiding acceptance of her prognosis, her seeming acceptance of this fate as "signed, sealed and delivered."

Her condition now defined her. Lost was her admired professional identity, her enticing flamboyance and her impressive creativity. In contrast, the elastic waistband generic jeans and supportive common sense Oxfords she wore now were unsettling. I resisted any urge to share my own diagnosis story.

Babbette is now driving a manually controlled vehicle and researching other adaptive technologies. Her commitment to the lines in a Tennyson poem, "To strive, to seek, to find, and not to yield" is inspirational.

Despite Babbette's candor, I am more resistant than ever to not go viral with my PD. I rationalize perhaps because when I was diagnosed some 23 to 24 years ago, "pre-existing conditions" created hardships for those unable to secure reasonable healthcare. But the truth is, at times I still want to keep my own secrets.

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To Tell or Not to Tell: Secrecy and Privacy

Guest blogger Cheryl Kingston of Los Angeles, California has lived with Parkinson’s for 23 years and uses humor and creative writing to share her personal experiences.

A few months ago, I had a surprise reunion with Babbette in the neighborhood’s Ross Dress For Less clothing store scouting for Speedo markdowns.

We had met years ago, as swim junkies at our local Y. And over time, our locker room banter fostered a guise of intimacy. Though we were veritable strangers, we shed our vulnerabilities and established a trust that our secrets be honored, and privacy respected.

In truth, we were in part keepers of one another’s stories in a profound yet superficial way. This female assembly was a safe refuge for sharing rites of passage, milestones, journeys, gibberish and simple tales of life on Planet Earth. Yet, I never revealed my diagnosis of Parkinson’s disease (PD) to her.

But as I rummaged through the wasteland of discount swimsuits, I was caught off guard in an awkward moment. I realize that Babette, a paragon of dignity and grace, held a three-pronged cane for balance. I instinctively braced myself for the fate she’d soon reveal.

Coming closer, moving into my space, as was characteristic of Babbette’s engagement, she blurted out her secret.

“I was diagnosed four years ago with MS (multiple sclerosis). I, for a period of time, was in a wheel chair; this walking stick enables me to negotiate these merchandise-strewn aisles more easily and gives me options, mobility and independence.”

I cringed. I felt trapped. And after 15 more minutes, I was feeling warm, claustrophobic and dizzy.

But perhaps more troubling than my involuntary detainment was Babbette’s abiding acceptance of her prognosis, her seeming acceptance of this fate as “signed, sealed and delivered.”

Her condition now defined her. Lost was her admired professional identity, her enticing flamboyance and her impressive creativity. In contrast, the elastic waistband generic jeans and supportive common sense Oxfords she wore now were unsettling. I resisted any urge to share my own diagnosis story.

Babbette is now driving a manually controlled vehicle and researching other adaptive technologies. Her commitment to the lines in a Tennyson poem, “To strive, to seek, to find, and not to yield” is inspirational.

Despite Babbette’s candor, I am more resistant than ever to not go viral with my PD. I rationalize perhaps because when I was diagnosed some 23 to 24 years ago, “pre-existing conditions” created hardships for those unable to secure reasonable healthcare. But the truth is, at times I still want to keep my own secrets.

Source:: Fox Feed Blog

Promising respiratory drug focus of new clinical trial for parkinson’s disease

A medication approved to treat various respiratory diseases and that has demonstrated neuroprotective effects in preclinical studies is the focus of a new clinical trial for Parkinson’s disease.

Source:: Science Daily

Stemming the flow: Stem cell study reveals how Parkinson’s spreads

New clues as to how Parkinson’s spreads from cell to cell, a process which has evaded researchers for decades, have been revealed by new research. The work is the first to link the release of alpha synuclein, a naturally occurring protein that plays a central role in the development of Parkinson’s, with its most common genetic risk factor — GBA-1 — shedding new light on its role in the progression of the devastating neurological condition and its symptoms.

Source:: Science Daily

What Richard Sees: Insight into Lewy Body Dementia Hallucinations

Ava Butler, a member of The Michael J. Fox Foundation community, shares what her husband’s diagnosis of Parkinson’s disease and Lewy body dementia has taught her — which she takes to heart at home, and in her career.

Lewy body dementia (LBD) is not as well-known as Alzheimer’s, but it is the second most common form of dementia. More than 1.3 million Americans are impacted by LBD, but little public attention is paid to this lesser-known disorder.

Lewy body dementia a progressive neurodegenerative dementia closely associated with Parkinson’s disease. My dear husband, Richard has both. (Editor’s note: LBD is a progressive neurodegenerative dementia that is also a form of Parkinsonism, meaning that it includes some of the motor symptoms of Parkinson’s disease, too. While most people with Parkinson’s do not also develop Lewy body dementia, studies suggest that having Parkinson’s increases your risk.)

Persistent and recurring visual hallucinations are often an early symptom of LBD. This was true for Richard. Not all LBD hallucinations are fear based, but Richard’s were. His ability to communicate clearly has been impacted and sometimes words come out in an unusual and poetic way.

Between 2013 and 2014 I documented, as clearly as I could, exactly what Richard told me he saw. I share what he told me as a way of providing insight to those whose lives are also impacted by LBD. Here are examples of what Richard has experienced as written from his own words:

Occasionally people come in the house at night, but they go away when we turn on the lights and look around for them.

The plants on the south balcony turned into little children again. Today they are musicians and they played for everyone down below. People danced to their music.

Today Richard has forgotten my name. He thinks it’s James Stephen Ping, his brother’s name. Then he calls me Damaged Portilla. He forgot his name too. “My name? How would I ever know that?” he says baffled by the thought of it.

“You’re making this up,” I say. “No,” says Richard, “that would be immature.”

At the time, we knew he had Parkinson’s, but knew nothing about LBD. At first, the hallucinations and dementia were far more difficult to manage than his physical symptoms. Now that his disease has progressed, his hallucinations have become more manageable and less frequent. But LBD remains our biggest challenge.

When Richard is having hallucinations, I:

  • Respect what he sees. Dismissing his reality is not helpful, and can actually make it appear that I am not trustworthy.
  • Remind him that we are safe, and that everyone is on our side
  • Ask him to look in my eyes. This can help ground him. Remind him that I love him and secure. However, if I’m part of the hallucination and am perceived to be involved in some conspiracy, I need to back off and give him space.
  • Ask him to describe what he sees. Sometimes this causes him to focus a bit more. What he sees can give me insights into how he is feeling. Anxiety produces scary hallucinations. If he is calm and secure, the hallucinations tend to be positive.
  • Improvise to turn the negative situation into one with a positive outcome. For example, “It first looked like it was a bad guy, but he’s actually very friendly and on our side,” or “I saw that guy before and he’s harmless and is actually here to help keep us safe.”
  • Tell him that he can instruct the people to leave him alone.
  • Walk slowly towards the hallucination and tell the people it time for them to go away now.
  • Move and talk slowly and calmly. Fast movements cause higher anxiety.
  • Be mindful of my own emotions. My own frustration, anger or stress will make things worse.

Source:: Fox Feed Blog

Register to walk today and follow the progress with #PUW2016!

On Saturday, April 23, over 10,000 walkers are expected to gather at the 2016 Parkinson's Unity Walk in New York City's Central Park to move one step closer to ending Parkinson's disease (PD). Here are five reasons why you need to be part of this year's event.

1. Be Proactive: Take action against Parkinson's by walking.

Joining the Parkinson's Unity Walk is a way to help the Parkinson's community move closer to a cure. While there have been advancements in research and therapies to improve PD symptoms, we need to keep this progress going. The Unity Walk welcomes anyone who wants a cure for PD — people living with Parkinson's, caregivers, family and friends — all are invited to come out and walk!

2. Be Informed: Learn more about living with Parkinson's.

At the Unity Walk, participants will have the opportunity to learn about disease management by visiting the booths of Parkinson's organizations, healthcare experts (including movement disorders specialists and members of a multi-disciplinary team) and movement disorders centers. You can also watch exercise demonstrations and visit the booths of our sponsors to learn about current medical therapies.

3. Be a Supporter: Help fund critical research for Parkinson's disease.

The Unity Walk is the largest grassroots fundraiser for Parkinson's disease research in the country. Since its inception in 1994, it has funded hundreds of research studies, with 100 percent of donations from the event supporting research funded by seven major Parkinson's foundations including MJFF.

In 2015, the Unity Walk raised $1.7 million to fund treatments to halt or slow the progression of the disease and improve the quality of life for patients.

4. Be Part of Something Big: Unite with the Parkinson's community.

The Parkinson's family is a large one. The Unity Walk lets you meet new people, as well as reunite with old friends. When you gather with thousands of fellow walkers, you will feel the impact of people connecting with one shared goal — ending Parkinson's disease.

5. Be Empowered: Finish the Walk strong.

As you cross the finish line, leave Central Park with a sense of promise for the future. With new tools in hand and the support of an entire community, our goal is to equip each participant with the knowledge and encouragement to live well with Parkinson's disease and work toward the rest of the year.

Help us make every step count and register at UnityWalk.org. And watch this video to learn more about why "You Need to Be Here at the Parkinson's Unity Walk."

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Five Reasons to Be at the 2016 Parkinson’s Unity Walk

The Parkinson’s Unity Walk committee lists their top five reasons to join the fun for this year’s Walk. Register to walk today and follow the progress with #PUW2016!

On Saturday, April 23, over 10,000 walkers are expected to gather at the 2016 Parkinson’s Unity Walk in New York City’s Central Park to move one step closer to ending Parkinson’s disease (PD). Here are five reasons why you need to be part of this year’s event.

1. Be Proactive: Take action against Parkinson’s by walking.

Joining the Parkinson’s Unity Walk is a way to help the Parkinson’s community move closer to a cure. While there have been advancements in research and therapies to improve PD symptoms, we need to keep this progress going. The Unity Walk welcomes anyone who wants a cure for PD — people living with Parkinson’s, caregivers, family and friends — all are invited to come out and walk!

2. Be Informed: Learn more about living with Parkinson’s.

At the Unity Walk, participants will have the opportunity to learn about disease management by visiting the booths of Parkinson’s organizations, healthcare experts (including movement disorders specialists and members of a multi-disciplinary team) and movement disorders centers. You can also watch exercise demonstrations and visit the booths of our sponsors to learn about current medical therapies.

3. Be a Supporter: Help fund critical research for Parkinson’s disease.

The Unity Walk is the largest grassroots fundraiser for Parkinson’s disease research in the country. Since its inception in 1994, it has funded hundreds of research studies, with 100 percent of donations from the event supporting research funded by seven major Parkinson’s foundations including MJFF.

In 2015, the Unity Walk raised $1.7 million to fund treatments to halt or slow the progression of the disease and improve the quality of life for patients.

4. Be Part of Something Big: Unite with the Parkinson’s community.

The Parkinson’s family is a large one. The Unity Walk lets you meet new people, as well as reunite with old friends. When you gather with thousands of fellow walkers, you will feel the impact of people connecting with one shared goal — ending Parkinson’s disease.

5. Be Empowered: Finish the Walk strong.

As you cross the finish line, leave Central Park with a sense of promise for the future. With new tools in hand and the support of an entire community, our goal is to equip each participant with the knowledge and encouragement to live well with Parkinson’s disease and work toward the rest of the year.

Help us make every step count and register at UnityWalk.org. And watch this video to learn more about why “You Need to Be Here at the Parkinson’s Unity Walk.”

Source:: Fox Feed Blog

Podcast: What Ever Happened to Stem Cells?

By Allyse Falce

In our latest podcast, moderator Dave Iverson speaks with Dr. Ole Isacson, a professor of neurology and neuroscience at Harvard Medical School and founding director of the Neuroregeneration Research Institute at McLean Hospital.

“Dr. Isacson wants to recreate the dopamine neurons that go missing in Parkinson’s disease with the goal of eventually transplanting those cells into a patient’s brain. A therapy that, in theory, would allow patients to once again generate their own dopamine supply.”

Dr. Isacson’s research involves induced pluripotent stem cells, which are created by taking a patient’s own skin or blood cells and reprogramming them.

“At Isacson’s lab and elsewhere, scientists can essentially turn back the cell biology clock, and then fast forward it again. A skin cell is turned back into a cell that could become any cell in the body, and then, in the case of Parkinson’s research, coaxed into becoming a dopamine producing cell – one that could eventually be transplanted back into that same patient’s body.”

Hear more expert discussion and ask your questions about stem cells in our Thursday, February 18 webinar. Dr. Isacson will be joined by MJFF CEO Todd Sherer for a discussion about stem cells and Parkinson’s disease.

Register for the webinar now.

Source:: Fox Feed Blog

Biomarker for early cognitive decline in Parkinson’s disease patients identified

Many patients with Parkinson’s Disease (PD) develop mild cognitive impairment (MCI) or dementia. Identifying biomarkers for cognitive impairment could be instrumental in facilitating both early diagnosis of MCI and developing new cognitive-enhancing treatments. New research indicates that lower concentrations of ?-synuclein in cerebrospinal fluid (CSF) is associated with reduced performance on several cognitive tests.

Source:: Science Daily

Research could inform new therapy for Parkinson’s disease

New research suggests the possibility of the regrowth of dopaminergic neurons in adult mammals, which could have significant impact in treating Parkinson’s disease.

Source:: Science Daily