Dance for Parkinson's: Yes, you can be a Bowie Hero

Julie Power, February 10, 2018

Craig Taylor participates in a dance class for people who have Parkinson's disease and their carers in the Utzon Room at the Sydney Opera House Photo: Janie Barrett

To the music of David Bowie's The Jean Genie and Heroes, the dancers dipped and turned, moving their hands to form the shapes of the king and the queen in the famous lyrics.

John Coles, 66, lifted his arms in the air, turning his palms in and out, attempting a classic ballet pose, as the dance class for people with Parkinson's disease and their families and carers began atthe Opera House's Utzon Room on Friday.

Occasionally Mr Coles' arms wouldn't fully obey his instructions, but many others in the room were struggling to control even unrulier limbs and jerky hands.

Later, Mr Cole, of Chatswood, beamed: "I enjoyed it very much. I like David Bowie and it is a good feeling you get from dancing, which is not something you normally do," he said.

"I am no good but I felt very happy doing it," he said, adding that the sense of joy and wellbeing he felt "was more important than the dancing".

There were times when they felt isolated at home, said Mr Coles' wife, Susan."And you may feel nobody understands, especially when [the disease] progresses," she said.

Parkinson's disease affects about 80,000 Australians, with about 20 of those diagnosed under 50 when diagnosed, and another 10 per cent under 40.

Participants in a dance class for people who have Parkinson's disease. Photo: Janie Barrett

The disease manifests itself differently, but typical symptoms include tremors, slowness of movement, rigidity, depression and anxiety.

I will be king. And you, you will be queen. Though nothing, will drive them away.We can beat them, just for one day. We can be heroesDavid Bowie's Heroes.

A pilot program by Dance for Parkinson's Australia with Ballet Queensland found people with Parkinson's who attended regular classes showed improvements in their gait cadence and velocity while walking in a straight line; they were more comfortable, had increased emotional wellbeing, and had an improved ability to communicate.

The program began in the United States in 2001,  and the Queensland study found it encouraged people with Parkinson's to try other activities, such as joining a choir. The disease has no cure, but singing and dancing can improve quality of life.

Queensland Conservatorium Research Centre's Professor Don Stewart told the ABC last week that people with Parkinson's who joined a choir were less embarrassed or worried about people's reactions to them.

"Some felt they had to conceal their Parkinson's from others or avoid situations which involve eating or drinking in public," he said.

At Friday's class at the Opera House, Erica Rose Jeffrey, the co-ordinator of Dance for Parkinson's Australia, urged participants - some in wheelchairs, others with walkers and some happy to dance in their chairs - to "dance with the body you brought here today".

After warming up, they were taught simplified dance moves by the Michael Clark Company's dancer Benjamin Warbis, who performed in one of the company's productions at the Opera House this month.

"Don't worry: I've been doing this for years and I still get confused," Mr Warbis said when his corps de ballet collapsed in confusion and laughter.

Kay Dunphy, 70, does Dance for Parkinson's classes twice a week in Sydney.

" I love it: it is the music as well that makes you so happy," said Ms Dunphy, who was diagnosed with Parkinson's eight years ago.

Sometimes she felt self-conscious in public, but not with her "dance friends". Only last week, Ms Dunphy's dance class broke into impromptu song, "We all started singing ... and we sounded wonderful."

The class is part of an ongoing accessibility program called Dance Connections, a collaboration between the Opera House and Dance for Parkinson's Australia.

Since 2015, it has held occasional dance classes based on works programmed at the Opera House, including the Australian Ballet.

http://health.einnews.com/article/431431888/9X7QqyOX7Hy5evpy

What to Ask Your Doctor About Parkinson’s Disease

February 9, 2018

(StatePoint) Talking to your doctor about any health concern can be tough, particularly when symptoms catch you by surprise or cause concern. And when it comes to Parkinson’s disease (PD), experts say there are many symptoms that often go unreported at doctor’s appointments, making them difficult to diagnose and treat.

For example, many people are aware of visible symptoms associated with PD, like resting tremors and loss of balance. However, more than half of people living with Parkinson’s also experience a lesser known aspect of the disease -- hallucinations and delusions.

“Over time, these symptoms may increase in frequency or become bothersome, as a person with Parkinson’s becomes less able to distinguish between what is real and what’s not. Fortunately, these symptoms often can be addressed.” says Neal Hermanowicz, MD, director of the Parkinson’s Disease & Movement Disorders Program at the University of California, Irvine.

To help you prepare for your appointment with a PD specialist, Dr. Hermanowicz says to consider the following statements, and if they apply to you, to tell your doctor at your next appointment.

• I sometimes feel out of touch with reality.

• Others tell me that what I am hearing, seeing or sensing (e.g., people, animals or objects) are not actually there (hallucinations).

• I have beliefs or fears that a loved one (perhaps a spouse, caregiver or friend) is stealing from me or being unfaithful (delusions).

Dr. Hermanowicz also suggests that caregivers prepare for the next appointment by considering the following statements and speaking to their loved one’s PD specialist if any of them apply.

• I have observed my loved one interacting with things, seeing things or sensing things that are not there (hallucinations).

• My loved one has had false beliefs toward me or others, such as believing someone is stealing from them or being unfaithful (delusions).

• These experiences have affected our daily life.

Learn more about hallucinations and delusions associated with Parkinson’s and download resources that will help initiate these critical conversations at MoretoParkinsons.com.

If you or someone you care for is experiencing these symptoms, you are not alone and you may be able to get help. Talk to a PD specialist to learn more about available treatment options. Be prepared for your next appointment by ensuring the conversation first starts at home. 

http://www.tehachapinews.com/online_features/health_and_wellness/what-to-ask-your-doctor-about-parkinson-s-disease/article_a77477aa-3209-5433-bc49-6265d12f3c9b.html

Help me raise funds and awareness for Parkinson's disease research!

Saturday, April 28, 2018

Central Park, New York 

Margaret Swope

Help me raise funds and awareness for Parkinson's disease research!

I have signed up to walk and fundraise for the Parkinson's Unity Walk which will be held in New York's Central Park.

As far as I can remember, I have always been athletic. To find out that I had Parkinson's Disease in 2004, was a total surprise! I had to learn everything that I could about this disease. I read everything and went to many seminars and have and still do participate in Clinical Trials. After reviewing my medical records it was determined that I had tremors in 1987, at age 38 years old. I can no longer smell, I drag my left legs often. I loose my balance but I do enjoy dancing. If I fall, I get right back up.

Many things happen to a person with Parkinson's Disease. As of this date, there is no cure, just medicine and/or DBS to help. I can not have DBS because of the damage done from my previous stroke in the area where the surgery would take place. I am getting ahead of myself.

Then came the major stroke in 2004, after my Parkinson's disease diagnosis. How could this happen? Paralyzed on my left side. I had to learn how to speak, chew and swallow foods, regain all movements on my left side including using my hand and fingers to pick up things, legs and feet to move, stand, learn balance and walking., rebuilding the muscles. I won't get into that. 

It took a year of 3 to 4 hours each day of all kinds of therapies. I had a blood clot in a vein burst in my brain. I thank God that I was able to get back to 99% of me. I have had 4 major surgeries for female problems, beginning in 1981 and so far no more since 2009.

In 2010, we (My husband and I) purchased a motor coach and traveled over the US spreading the word about Parkinson's disease and passing out brochures We no longer have the motor coach.

When I was diagnosed with Dystonia of the feet and calves, I thought ok, I have had enough. Surely, nothing else will happen. But I was wrong, more would come. I lost the bone in my lower jaw and ended up with cadaver bone, implants, and gums, and snap in lower dentures. I have had 6 other surgeries adding more bone and gum. Through all of this, I continue to feel totally BLESSED!

I used to be shy, but I give seminars on Parkinson's Awareness and continue to copy and paste the daily updates of news on this blog for all to read.

I Thank God for helping me. Of course I have pity me times, and say, Why Me, Lord? I am human, but most of the time when this happens, I look in the mirror and say, Why Not Me? I am a fighter and I will continue to fight this disease called Parkinson's Disease. I continue to exercise and meditate.

My husband Larry, is my best friend.We have been married for 52 plus years. In 1967 he joined the Marine Corps as an enlisted Marine , then  became a warrant officer 4 Selective  and retired as a Capt serving over 22 years. ( A Mustang). I am fortunate to have the support of my family and friends.

I also have a maltese named Spencer who is my Service dog. God has truly blessed me and I am thankful.   I am unable to smell  and Spencer, saved me from an electrical fire. 

He also can step on an emergency button to contact the monitoring company if an emergency should arise.

Parkinson's Awareness is important to me.  I continue to exercise, meditate and thank the Lord for each day. God Bless our military and their families. God Bless the USA. Semper Fi !

I would appreciate your assistance in helping me raise funds (tax deductible) for the Parkinson's Unity Walk in my name: Margaret Swope

Please go to:  

http://support.unitywalk.org/site/TR/Walk/General?px=1004515&pg=personal&fr_id=1080

Your donation is tax deductible.

Thank you so much!

I hope you continue to stop by and read my blog.



New test speeds up diagnosis of Parkinson's, Lewy body dementia

By Danielle Haynes, February 9, 2018

The National Institutes for Health said a new test to detect Parkinson's disease and dementia with Lewy bodies could shave more than 10 days off the wait time of other similar tests. File Photo by Anawat Sudchanham/Shutterstock

Researchers at the National Institutes of Health said they've developed a new test to detect Parkinson's disease and dementia with Lewy bodies, shaving days off the wait time of existing tests.

The NIH's National Institute of Allergy and Infectious Diseases created the test by modifying one used for the early diagnosis of prion diseases, a group of neurodegenerative disorders caused by transmissable pathogens

For Parkinson's disease, the test detects levels of Lewy bodies in spinal fluid. Lewy bodies are the abnormal clumping of alpha-synuclein, a protein.

Parkinson's disease and dementia with Lewy bodies both resemble prion diseases, which result in the deterioration of brain functions. But Parkinson's disease is about 1,000 times more common than prion diseases, and Lewy body dementia is even more common.

Scientists conducted the test on 60 cerebral spinal fluid samples, including 12 from people with Parkinson's, 17 from people with dementia with Lewy bodies, and 31 controls, which included 16 people with Alzheimer's disease. The test eliminated all 31 controls and correctly diagnosed the samples with Parkinson's and dementia with Lewy bodies with 93 percent accuracy, the study indicates.

The NIH said the results from the test were available within two days, sooner than other related tests that take up to 13 days.

"Early and accurate diagnoses of these brain disorders is essential for developing treatments and identifying patients eligible for clinical trials," NIH researchers said in a news release. "The diseases typically progress for years before symptoms appear, and once they do, distinguishing one disease from another can be difficult."

https://www.upi.com/Health_News/2018/02/09/New-test-speeds-up-diagnosis-of-Parkinsons-Lewy-body-dementia/2911518203905/

Giving Care, Taking Care Conference

February 9, 2018

Monday June 04, 2018 - 9:00AM

Tukwila Community Center |

12424 42nd Avenue South | Tukwila, WA

Monday, 9 am - 4:30 pm

Caring for an elder or an adult with disabilities? Learn more about caregiver survival tips, legal planning, dementia basics, helpful products and agencies, reducing stress, finding joy, and more at this one-day conference.

Registration: Sign up before May 14, 2018 to receive the reduced registration fee - $30 for family and volunteer caregivers, and $50 for agency-based community caregivers. Limited space is available and there will be no registration at the door.

Find out more here or call 360.275.2544 or 1.800.422.3263 to leave a voicemail with your name and street mailing address.

https://nwpf.org/participate/events/giving-care,-taking-care-conference/

Surviving dog attacks and windstorms, he walked 2,594 miles to raise money for Parkinson's

February 9, 2018 Donna Freydkin, Randi Fisch

Couch potatoes, meet Bill Bucklew.

He’s walked a total of 2,594 miles to raise money for The Michael J. Fox Foundation for Parkinson's Research, hitting the road on Nov. 24 and finishing up on Jan. 31. But here’s the kicker: Bucklew himself suffers from early-onset Parkinson’s. He was diagnosed in 2012 at 43.

During his journey, he crossed eight states: Georgia, Alabama, Mississippi, Arkansas, Texas, New Mexico, Arizona and California. He wore out 26 pairs of shoes. He lost 37 pounds. He raised more than $120,000. But every road has its potholes.

Watch video:

https://youtu.be/RlXAZ6TiOhI

http://www.today.com/video/man-who-walked-3-000-miles-to-fight-parkinson-s-i-had-help-along-the-way-1157674563963

His five greatest roadblocks:

1. A 15-hour rainstorm in Texas: "I was walking with Jimmy Choi, another team Fox member, and the rain was relentless and pouring all day. The rain is particularly hard on my feet and caused blisters. We walked until around 6 p.m. in solid rain for 11 hours straight. It looked like it was going to clear, so I spent 45 minutes changing my socks, shoes and clothes... and within 20 mins of walking again, the pouring rain started again."
2. An encounter with a pack of coyotes: "In Texas, (my wife) brought us some Chinese food around 8 p.m. After eating it, I set out to finish walking for the evening and coyotes followed me and I could hear them howling from all sides of the road. Some were just a few feet away."
3. A total of 16 dog attacks: "Dog encounters were consistent throughout but particularly at night and during the first four states. I encountered everything from an ambivalent owner, who wouldn’t call back her dog, to a dog that attacked me at full speed, without barking, and attacked my walking stick in its mouth, gnashing it’s teeth."
4. His stress fracture: "I had huge blisters on my both feet throughout the walk on my toes. I redesigned my shoes to take pressure off the toes some. As a result, after several days of wearing these shoes, while the blisters on my toes got better, it was tremendous pressure on the top of my foot."
5. A run-in with a flying mailbox during a wind storm: "It was a beautiful morning. Within an hour ... the wind started to pick up dramatically over a short period of time. Within minutes, there was 30-35 mph sustained winds with gusts up to 40-50 mph. After walking for several miles into this headwind, and seeing all kinds of debris blow by like tumbleweeds and house siding, I went into a ditch to try and call an Uber, the hotel and two taxi companies. At that moment, a giant mailbox flew right over my head!"

https://youtu.be/Of5XxJCLQh0

https://www.today.com/health/he-walked-2-594-miles-raise-money-parkinson-s-surviving-t122686?cid=public-rss_20180209

Physiotherapy can help manage symptoms of Parkinson’s, says NICE

February 9, 2018

Physiotherapy can help people with Parkinson’s to manage their symptoms, maintain their independence and avoid hospital admission.

NICE says adults with Parkinson's should have access to specialist services such as physiotherapy

This is according to a new quality standard published on 9 February by the National Institute for Health and Care Excellence (NICE).

It suggests that people with Parkinson’s should be referred to physiotherapy, occupational therapy or speech and language therapy if they have problems with

• balance
• motor function
• activities of daily living
• communication
• swallowing or saliva

NICE adds that all adults with Parkinson’s should have contact with a specialist physiotherapist, who is able to ensure that disease-specific care is given.

Ann Ashburn, professor of rehabilitation at the University of Southampton, said: ‘We welcome the statement emphasising that people with Parkinson’s should have a point of contact and on-going access to specialist services including referral to physiotherapists with experience of Parkinson’s disease.’

The new quality standard is intended to fit into the NICE Pathway on Parkinson’s disease. And the institute hopes it will contribute to improvements in areas including patient experience, health-related quality of life and hospital admissions and readmissions.

http://www.csp.org.uk/news/2018/02/09/physiotherapy-can-help-manage-symptoms-parkinsons-says-nice

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Protein That Increases Dopamine Release Could Become Parkinson’s Therapy, Study Reports

FEBRUARY 9, 2018   BY ALICE MELÃO

Administering a naturally occurring protein directly to the brains of rats increased the amount of the neurotransmitter dopamine going to the animals’ nerve cells, suggesting it could be a way to treat Parkinson’s, a study reports.

The findings further demonstrate the MANF protein’s potential to treat Parkinson’s and other neurodegenerative disorders, according to the company developing such a therapy, MANF Therapeutics. The Amarantus Bioscience subsidiary is conducting preclinical-trial studies on the potential treatment that it hopes will lead to trials.

One of the hallmarks of Parkinson’s is the death of dopamine-producing brain cells. Dopamine facilities communication between nerve cells.

Another Parkinson’s hallmark is the clumping of abnormal forms of α-synuclein protein in nerve cells — which scientists call Lewy bodies.

Preventing these two events could be a way to treat the disease, researchers believe.

MANF proteins belong to a protein group called neurotrophic factors. They help maintain nerve cells’ health and function and promote their recovery from injury.

Because of these characteristics, researchers have been looking at the proteins as potential therapies for central nervous system conditions such as Parkinson’s. The full scientific name for MANF proteins is mesencephalic astrocyte-derived neurotrophic factor proteins.

The main idea behind using neurotrophic factor proteins as Parkinson’s treatments is they may be able to rescue the dopamine-generating nerve cells that have deteriorated in the disease.

But MANF Therapeutics said MANF proteins may not only be able to rescue dopamine-generating nerve cells but also increase dopamine release — a significant improvement over other approaches. Scientists have been doing preclinical-trial studies of MANF proteins as a possible treatment for glaucoma as well as Parkinson’s.

In a recent study, researchers compared the effects of administering different neurotrophic factor proteins, including MANF, to a specific region of the brains of healthy rats.

The research, “Mesencephalic Astrocyte-Derived Neurotrophic Factor (MANF) Elevates Stimulus-Evoked Release of Dopamine in Freely-Moving Rats,” appeared in the journal Molecular Neurobiology.

A week after the treatment, the brain cells of the rats that received MANF proteins were releasing a lot more dopamine in response to stimulus than animals treated with other neurotrophic factor proteins or a placebo.

“Although the cellular mechanisms remain to be clarified, knowing the biological effects of exogenously administrated NTFs [neurotrophic factor proteins] in [an]intact brain is an important step towards developing novel neurotrophic treatments for degenerative brain diseases,” the researchers wrote.

“These data are significant because they propose a unique mechanism of action for MANF in Parkinson’s disease that provides a rationale for potentially improved treatment efficacy with MANF versus other neurotrophic factors in development,” MANF Therapeutics said in a press release.

https://parkinsonsnewstoday.com/2018/02/09/study-reports-that-parkinsons-might-be-treated-with-dopamine-releasing-protein/

Undergraduate student uncovers genes associated with aggressive form of brain cancer

February 8, 2018, Clemson University

In the NCBI brain network, each point represents a gene, and each line is indicative of gene co-expression. Credit: Oncotarget, doi:10.18632/oncotarget.24228

When Leland Dunwoodie, an undergraduate researcher in biochemistry, approached his PI about wanting to start research on "some human stuff" in the spring of 2016, he didn't imagine it would lead to the discovery of 22 genes that are implicated in glioblastoma, the most aggressive type of brain cancer.

"I definitely didn't come to Clemson thinking about brain cancer research," Dunwoodie said. "I was working on a project with grapes and other plants. I told Dr. (Alex) Feltus that I wanted to do some human stuff, and he said, 'That's cool - pick an organ.' "

After consulting with his family - should he study the brain or the heart? - Dunwoodie decided on the brain, and specifically on brain cancer. A prior summer internship at the Van Andel Institute had spurred his interest in cancer research.

Fast-forward two years later to a January 2018 publication in the journal Oncotarget, Dunwoodie's study is the first to describe glioblastoma-specific gene co-expression relationships between a group of 22 specific genes.

Heard in the news as the disease afflicting Senator John McCain and Beau Biden, the late son of U.S. Vice President Joe Biden, glioblastoma is highly malignant and is characterized by its lethality. Patients with glioblastoma have a median survival time of only 14.6 months after diagnosis.

"Like many other tumors, diseases, and complex traits, glioblastoma is controlled by a variety of genetic and epigenetic factors," Dunwoodie said. "If there was one master-regulator of these cancers, we'd say, 'We're going to drug that, and we're going to save millions of lives every year,' but there are more things going on in glioblastoma than we can presently identify."

However, the complexity of glioblastoma is fitting for research in professor Feltus' Systems Genetics Lab in the department of genetics and biochemistry, where Dunwoodie is a student. Systems genetics, as the lab's name implies, uses computer- and mathematics-based approaches to analyze biological systems, such as genes and regulatory pathways.

To make the discovery, Dunwoodie first compiled data from two online public databases for genomic information: The Cancer Genome Atlas (TCGA) and the National Center for Biotechnology Information (NCBI).

From TCGA, more than 2,000 tumor expression datasets were downloaded, each one detailing how tumor cells differ from normal cells at the genetic level. Five different types of tumors, including those from bladder, ovarian, thyroid, lower-grade glioma and glioblastoma cancers, were included in the data to achieve a well-rounded case study.

The 2,000-plus datasets, each showing approximately 75,000 genes, were then organized into a gene expression matrix (GEM), a table that quantifies the expression level of each gene across every sample. For example, one of the genes pulled from TCGA, called LAPTM5, encodes a protein that is involved in the formation of blood cells. In the gene expression matrix, LAPTM5 was assessed across each tumor type to gauge whether it is overly active (overexpressed) or underactive (underexpressed) in one tumor type versus another, indicated by a numerical ranking. The same scoring process was then conducted for the 74,999 remaining genes across the five tumor types in the TCGA data.

A separate GEM, encompassing 210,000 genes from 204 datasets from the NCBI database - including normal brain samples, glioblastoma brain samples and brain samples from patients with Parkinson's disease - was created independently for comparison. Will Poehlman, a graduate student in the Systems Genetics Lab, assisted Dunwoodie in preparing these GEMs.

Using novel computer software developed by Feltus and former graduate student Stephen Ficklin - who is now an assistant professor at Washington State University - Dunwoodie was then able to translate the GEMs into two different gene co-expression networks (GCNs), a visual representation of the data that provides insights into how the genes interact with one another.

The software package, known as Knowledge Independent Network Construction (KINC), is novel in that it finds expression relationships between genes without the researchers having to conduct any prior analyses. This knowledge-independent method reduces the amount of "noise" - from laboratory protocols or from natural variation between cells - that can prevent genetic interactions from being discovered.

"Through the two GCNs, we found a group of 22 genes that were co-expressed in a single module both in The Cancer Genome Atlas network and in the NCBI brain network," Dunwoodie said. "Only about 70 genes overlapped between the two networks, and 22 of them were in the same module - the same group of co-expressed genes. The overlap was really easy to spot."

While it's tempting to think that the genes - many of which function in the immune system - are feeding off one another to affect glioblastoma, Dunwoodie says this isn't exactly the case.

"It's hard to say that they're working together, because these are correlations. So, if person A runs eight miles on the same day that person B runs eight miles, it doesn't necessarily mean that they're running together," Dunwoodie said. "It's more likely that these genes are being regulated in the same way, and there are probably several things regulating them that we can't currently identify."

What's more - these 22 genes, when compared between glioblastoma and noncancerous samples, were found to have much stronger co-expression levels in glioblastoma, suggesting a disease-specific regulatory mechanism. The same finding was uncovered when comparing glioblastoma to lower-grade glioma, a less aggressive type of brain cancer, indicating a glioblastoma-specific activity to the 22 genes. The other notable finding of the study showed that the 22 genes are more associated with mesenchymal glioblastoma, a distinct subtype of the cancer, and that when the genes are highly expressed, they decrease survival time for patients in the mesenchymal group.

As is the case in research, where answering one question results in a plethora of new questions, the team's study is just one step toward understanding glioblastoma pathogenesis.

"It would be nice to find out what the 22 genes are specifically doing," Dunwoodie said. "Are they expressed in the surrounding immune cells? Are they a cause of cancer, or are they an effect of cancer? Does cancerpropagate their expression? Why these genes are co-expressed there and what they're doing are questions that haven't been answered."

Dunwoodie - who plans to attend medical school to become a physician informaticist - says the tools and methods he learned in the Systems Genetics Lab will stick with him long into his career.

"Cancer research is interesting because there are so many amazing people doing so many amazing things - but this is just one drop in the bucket," Dunwoodie said. "For me, the real purpose is patients being cured. Getting a paper published is great, but no one was immediately cured because of this, and that's the ultimate goal."

More information: Leland J. Dunwoodie et al, Discovery and validation of a glioblastoma co-expressed gene module, Oncotarget (2018).  DOI: 10.18632/oncotarget.24228 

Journal reference: Oncotarget

Provided by: Clemson University

https://medicalxpress.com/news/2018-02-undergraduate-student-uncovers-genes-aggressive.html