Parkinson's support group helping sufferers and carers prepare for what may be

ABC Northern Tasmania 

By Fred Hooper

Posted yesterday at 10:40pm

PHOTO: Hayley Milne was diagnosed with Parkinson's disease about five weeks ago. She goes to the support group to get an idea of what may lie ahead for her as the disease progresses. (ABC Northern Tasmania: Fred Hooper )

Every fortnight a group of people get together in a small room at the northern integrated care service building in Launceston and they all have one thing in common — Parkinson's disease.

Some people in the support group live with the disease, others have family members or friends living with it, and the support group offers a place to share ideas and thoughts. 

Diana Newell has been going to the fortnightly sessions for about seven years after her husband was diagnosed with the disease 14 years ago.

"I'm just a carer, but I might be able to give them a little hint on what I've tried and it's worked, and what I've tried and it hasn't worked," Ms Newell said.

"The reason I came along originally was because I didn't know enough about Parkinson's.

"You can come along and speak to some of the people who have it and find out some information."

Ms Newell was attending the meeting alone and now feels she can offer more support and advice to others as well as using it for her own knowledge.

Support for those in the early stages of Parkinson's

The group is mostly made up of people who have been living with the disease for a while, with only a small number of young people in the earlier stages of the disease. 

"The [young] people are actually still working and sometimes they think 'oh, there's nothing there for me, I'm still young, I don't really need that support' and they just don't come along," Ms Newell said.

"Sometimes you find the early onset ones maybe find it a little intimidating with older people, sixties and seventies who have the disease, and they are a little nervous and frightened of what they might see and think."

The one exception in the room is 41-year-old Hayley Milne from Launceston.

She was diagnosed five-weeks-ago and she has a lot of questions.

"I think my first thought was family," Ms Milne said.

"How it will impact in the future, on not only my children and my husband and my friends, but sort of your life, you're only 41 and not sure which way your life is going."

Before her diagnosis Ms Milne noticed tremors in her head, at first she was able to ignore them, until they progressively became worse and started to affect her balance.

"At the beginning, before any medication, they were quite light but then they got that bad that every time I walked it was almost like my brain was hitting my skull," Ms Milne said.

In only her second session with the support group Ms Milne seems quite calm and happy to take in as much information as she can.

"I think the first week was the most interesting," Ms Milne said.

"They call it a designer disease because everybody's so different and seeing the group, everybody is so much older and so much more developed into the disease."

PHOTO: Diana Newell's husband lives with Parkinson's disease and she attends the support groups to helps others. (ABC Northern Tasmania: Fred Hooper)

In recent weeks the disease has impacted on Ms Milne's ability to work, stopping her from working altogether, which has been one of the biggest challenges yet.

"I've always worked, I've always worked through all my pregnancies, I've worked up until the day I gave birth and then straight after," Ms Milne said.

Now Ms Milne is on medication, which has stopped her head tremors, making life a little easier and she is just simply hoping to take away one key message from the group sessions.

"Just to be prepared for what may come, but I mean it may not come," Ms Milne said.

http://health.einnews.com/article/285541688/ni3qVPRU_-8S6Pdr

External brain stimulation temporarily improves motor symptoms in people with Parkinson's

Sept.10, 2015

People with Parkinson's disease (PD) tend to slow down and decrease the intensity of their movements even though many retain the ability to move more quickly and forcefully. Now, in proof-of-concept experiments with "joysticks" that measure force, a team of Johns Hopkins scientists report evidence that the slowdown likely arises from the brain's "cost/benefit analysis," which gets skewed by the loss of dopamine in people with PD.

A volunteer models the noninvasive, electrical stimulation device used to help patients with Parkinson's disease. 

Credit: Reza Shadmehr, Johns Hopkins Medicine

In addition, their study with a small group of 20 patients with PD demonstrated that stimulation of the cortex of the brain using external electrodes corrected some of the distortion and temporarily improved some patients' motor symptoms. PD affects up to 1 million Americans.

"The loss of dopamine associated with Parkinson's disease makes the effort required to move the affected side of the body seem greater, so the brain is less willing to use that arm to complete tasks," says Reza Shadmehr, Ph.D., professor of biomedical engineering at the Johns Hopkins University School of Medicine. "Our study suggests that direct current stimulation can compensate somewhat for the loss of dopamine by decreasing the effort the brain has to put into getting its motor neurons to fire," adds Shadmehr, the senior author of a report on the research published online in The Journal of Neuroscience on Sept. 2.

According to the researchers, their experiments stemmed from the knowledge that dopamine, the chemical released throughout the cortex of the brain by specialized neurons, is known to make animals more likely to exert effort to achieve a reward. In Parkinson's, dopamine neurons generally die on one side of the brain, affecting the ability of the patient to exert effort with the opposite side of the body. In urgent situations as simple as preventing a ball from falling off a table, for example, people with PD can often still make rapid, intense movements with their affected arm, but it seems as though the brain's "cost assessment" for making everyday movements is abnormally high.

To test this hypothesis, Shadmehr and his team first designed an experiment to measure how much force a patient's brain was willing to "assign" to each arm. In their first experiment, participants, all right-handed, included 15 healthy volunteers and 15 with PD, ages 50 to 75, who had had Parkinson's for two to 20 years and were receiving medication to control their symptoms, such as tremors, muscle rigidity and lack of balance. With their arms held in mobile supports above a table, participants were asked to grip the handles at the ends of the supports, which could measure the force applied to them. Participants then had to apply about 4 pounds of muscle force to the handles to move an electronic cursor on a computer screen to a target. They could use any combination of both arms to achieve the task. This was repeated 10 times in 16 different directions representing a full circle.

When performing this task, healthy participants shared the effort between both arms: They split the 4 pounds of force between their two arms fairly equally and never applied more than 30 percent more force with one arm than with the other. By contrast, on average, patients with PD showed a twofold greater preference for their less affected arm, sometimes skewing their effort by as much as 70 percent toward the less affected arm.

Shadmehr's team says the difference was not due to a lack of strength in the affected arm of the patients with PD, because the team also tested each arm's ability to apply force in every direction and found that the patients' strength was comparable to that of healthy individuals.

What did stand out, the researchers say, was how direction-dependent the outcomes were. For example, when a patient was asked to move the cursor to the 3 o'clock position on the screen, she might entirely favor her left (unaffected) arm. However, when the patient was asked to move the cursor to the 12 o'clock position, she might share the effort equally between her two arms. In addition, the researchers noticed that patients avoided using their affected arm particularly in the directions in which they exhibited a greater amount of variability, or "noise," when generating force. That is, the increased effort appeared associated with a poorer ability to control the generation of force.

Guessing that the reduced ability to control force in patients with PD was related to decreased dopamine -- which makes it harder to "recruit" neurons for a particular task -- the researchers devised a brain stimulation experiment to further test their hypothesis.

"The greater the number of neurons firing together to complete a task, the less they each have to fire and the more controlled the resulting action is," says Shadmehr. "In Parkinson's, the loss of dopamine might mean that neurons that control movement don't fire as easily, which means that a few neurons have to do the whole job and can't perform as well, generating noisier output. The brain seems to know this and avoids assigning effort in those directions where it has less control."

To overcome this problem, the team used transcranial direct current stimulation (tDCS) on a total of 25 patients, 10 for each of three tests, with some participating in more than one test. They reasoned that by increasing the electrical current within the neurons using mild stimulation through electrodes placed on the scalp, the cells would be closer to their firing threshold and would be easier for the brain to engage.

In another experiment involving 10 patients, where neither the patients nor the clinicians evaluating them knew what kind of stimulation they received, the investigators found that one form of stimulation, known as cathodal tDCS, worked best and that the patients who got such stimulation were more willing to engage their affected arm than those who received no stimulation, or anodal stimulation. The researchers also saw a related decrease in the variability associated with these patients' movements. Importantly, they observed that the stimulation produced an average improvement of 25 percent in the motor symptoms of the patients, as quantified via the motor component of the Unified Parkinson's Disease Rating Scale (UPDRS), particularly improving rigidity on the affected side.

Finally, the researchers tested the effectiveness of tDCS in 10 patients over a 10-day period. On the first three days, participants received no stimulation or fake stimulation; on days four through eight, they received cathodal stimulation; and on days nine and 10, no stimulation. Each day, they were given the arm movement test and the UPDRS. The results showed that improvement was real but temporary, in that it only occurred on those days on which cathodal tDCS was given.

"As far as we know so far," Shadmehr cautions, "the effects of tDCS are very temporary, but that's not surprising since no new dopamine cells are being created, which is the root of the problem." Nevertheless, he says, "tDCS is a relatively simple, painless and inexpensive intervention that could be developed for home use, a device we are working on. It's possible," he adds, "that the brain would get used to the stimulation -- just as it adjusts to medications -- and also become less responsive over time, but we are hopeful that continued stimulation might improve symptoms."

Adapted by MNT from original media release

https://mail.google.com/mail/u/0/?tab=wm#inbox/14fb872584c91773

Researchers perform first focused ultrasound treatments in the U.S. for dyskinesia

Sept.2,2015  

Researchers at the University of Maryland and the University of Virginia have performed the first focused ultrasound treatments in the United States for dyskinesia associated with Parkinson's disease.

These treatments are part of international pilot studies of 40 patients assessing the feasibility, safety and preliminary efficacy of MR-guided focused ultrasound pallidotomy for dyskinesia that occurs with Parkinson's disease.

Investigators are using magnetic resonance imaging (MR) to guide ultrasound waves through the intact skin and skull to reach the globus pallidus, a structure deep in the brain. If successful, focused ultrasound could offer an alternative approach for certain patients with Parkinson's disease who have failed medical therapy or become disabled from medication-induced dyskinesia. To date, seven patients in Korea and one patient in Canada have been treated in studies.

"We are excited to offer our patients a new, non-invasive therapy to control their Parkinson's symptoms," said Howard M. Eisenberg, MD, Chair of Neurosurgery at the University of Maryland School of Medicine. "The neurology community has made significant strides in helping patients with Parkinson's over the years; utilization of MR-guided focused ultrasound could help limit the life-altering side effects like dyskinesia to make the disease more manageable and less debilitating."

"This opens up a new frontier for focused ultrasound therapy, building upon previous research which suggests that focused ultrasound can alleviate essential tremor," said Jeff Elias, MD, Professor of Neurological Surgery at the University of Virginia. Dr. Elias led the Focused Ultrasound Foundation-funded pilot trial which investigated focused ultrasound for essential tremor (ET). The ET study results were published in the New England Journal of Medicine, and led to a larger pivotal trial, which was recently completed. In addition, enrollment has just completed in a pilot study assessing focused ultrasound for tremor-dominant Parkinson's disease.

The Parkinson's dyskinesia studies are being conducted using the ExAblate Neuro system developed by Insightec. "This is another major achievement in the development of focused ultrasound, which is under investigation to provide less invasive relief to patients suffering from movement disorders. We congratulate the teams in Maryland and Virginia for their pioneering spirit and support of the technology," said Eyal Zadicario, Vice President for R&D and Director of Insightec's Brain Program.

Funding for the Parkinson's dyskinesia studies has been provided by the Focused Ultrasound Foundation and The Michael J. Fox Foundation for Parkinson's Research, in collaboration with Insightec as regulatory sponsor. Eligible patients will include those whose medication has failed to satisfactorily control dyskinesia, who are not candidates for surgery or who choose not to undergo surgery. If the trials are successful, a large study is planned in advance of seeking FDA approval and reimbursement of focused ultrasound to treat Parkinson's disease.

"This milestone marks an important step forward in the development of focused ultrasound as an alternative for Parkinson's and other movement disorders as well as brain tumors," said Foundation Chairman Neal F. Kassell. "This progress reflects the work of many innovative minds and the collaboration of several organizations committed to advancing paradigm-shifting solutions."

Source:

Focused Ultrasound Foundation

http://www.news-medical.net/news/20150902/Researchers-perform-first-focused-ultrasound-treatments-in-the-US-for-dyskinesia.aspx 

      

       

Treatment for Parkinson's could replace surgery

Sept. 7,2015

Baltimore, MD-- September 2, 2015--Kimberly Spletter of Frederick, left, has a follow-up appointment with neurologist Dr. Paul Fishman, right, at the University of Maryland Medical Center. She recently had a new treatment for Parkinson's disease called "MRI-guided focused ultrasound." 

(Barbara Haddock Taylor / Baltimore Sun) caption

Kimberly Spletter's knee would pop backward involuntarily, or her leg would shake uncontrollably. Sometimes she'd cross her legs tightly, trying to make it all stop — to no avail.

"I had to live with it," said the 50-year-old Frederick woman, who suffers from Parkinson's disease. "I tried to keep it to a dull roar, but that was the best that I could do."

That all changed in a matter of hours last week after Spletter underwent a groundbreaking procedure at the University of Maryland Medical Center that guided ultrasound waves through her skull to kill the brain cells interfering with her motor skills. She's participating in a clinical study looking at a cutting-edge way — known as focused ultrasound — to possibly treat certain Parkinson's symptoms non invasively.

Device developed at Hopkins could help Parkinson's disease symptoms

As many as 1 million people in the United States live with Parkinson's, a nervous system disorder that affects movement and becomes progressively worse over time. The disease most often afflicts older people, but about 4 percent of those suffering from it are under age 50. Symptoms include tremors, stiff limbs, trouble balancing and a general slowdown in movement. Medications can ease the symptoms but may trigger other side effects in patients.

Spletter was the first participant at the University of Maryland Medical Center to participate in the study, which also is being conducted in Korea, Canada and at the University of Virginia.

Spletter said many of her painful symptoms have subsided, and she is looking forward to evening walks in downtown Frederick as her condition continues to improve.

"I feel like a got a new lease on life," she said. "My quality of life has improved so much."

The question is for how long.

Scientists already know that targeting specific cells in the brain can minimize Parkinson's symptoms. But current treatments involve more aggressive tactics than the procedure doctors performed on Spletter.

The more common method is to cut a hole into a patient's head and put electrodes on a specific part of the brain. A stimulator implanted under the skin of a patient's collar bone transmits small electrical pulses to block symptoms.

Doctors also can use radiation to destroy cells or insert a needle through the head and use radio frequency waves to heat the cells to destroy them.

There were no cuts made to Spletter's skull as part of her procedure. The most she felt was intense pressure from a metal frame and helmet tightened around her head to prevent it from moving.

Ultrasonic waves were directed through Spletter's skull, much like a magnifying glass aims sunlight at a certain spot. The waves provide energy that is low enough that they don't damage the brain as they pass through, but, where they meet at single point, the energy adds up, creating enough heat to kill the cells.

The procedure was done as Spletter lay in a MRI machine so doctors could watch what was happening. They would stop from time to time to see if she was having vision problems or other side affects that might signal they weren't targeting the correct part of the brain.

Once they had a target, doctors asked Spletter to perform certain exercises, such as touching her thumb to her finger or pretending to press a gas pedal with her foot, to see if the surgery was working.

"The effects are immediate," said Dr. Paul Fishman, a professor of neurology at the University of Maryland School of Medicine, who has treated Spletter for several years and recommended she

participate in the trial. "We saw improvement in her Parkinson's while doing her procedure."

Spletter could not believe what was happening.

"It was a miracle," she said.

The procedure performed on Spletter is one of many in the rapidly growing medical field of focused ultrasound. When the Focused Ultrasound Foundation was founded nine years ago, the therapy was being looked at to treat three conditions. Today, there are more than 58 ways the treatment is being used in various stages of research, development and commercialization.

It has been used to treat fibroid tumors, brain tumors and obsessive-compulsive disorder. There are plans for a clinical trial to see it could be used to treat Alzheimer's disease. The Parkinson's study builds off a previous pilot trial that looked at focused ultrasound to treat essential tremor, another progressive movement disorder.

"This is just one arrow in the quiver that neurosurgeons will have, if it works, to treat Parkinson's disease," said Dr. Neal F. Kassell, founder and chairman of the Focused Ultrasound Foundation, which is funding part of the study, and a professor of neurosurgery at the University of Virginia.

Kassell and the University of Maryland researchers caution that more research is needed to determine how effective the treatment is in treating Parkinson's. The study Spletter participated in will ultimately include 40 patients, who will be followed for a year.

"One of the things we don't know is whether this is durable," said Dr. Howard M. Eisenberg, principal investigator and the Raymond K. Thompson Chair of Neurosurgery at the University of Maryland School of Medicine. Spletter "was good today. She was seen a few days ago, and she was good. We don't know if she'll be good in six months."

A larger study will need to be done eventually.

"It is in its early stages," Kassell said. "It remains to be proven definitively in a rigorous scientific trial whether it provides true value in terms of improving outcomes and reducing costs."

The study also is limited in scope. For instance, researchers are looking only at subjects with symptoms on one side of their bodies. Parkinson's only affects the left side of Spletter's body. Participants also must have had a negative reaction to levodopa, a drug used to treat Parkinson's that sometimes leads to a poor quality of life.

Spletter was nervous about participating in the trial at first.

"There wasn't enough information out there about it," she said. "If I had been the 5,000th patient, I would be pretty calm about it. But fear of the unknown kept bothering me."

But Spletter's condition had become so bad that she was hoping for any relief. She couldn't walk anywhere and was almost always in pain. At restaurants, she sat on the inside of booths so people wouldn't stare at her trembling leg.

She knows there is a chance the effects of the procedure might not last long. For now, she is enjoying her new life — and looking forward to those downtown walks.

"It doesn't seem like a big deal," she said. "But when you can't do it, it is."

twitter.com/ankwalker

amcdaniels@baltsun.com

http://health.einnews.com/article/285132621/5BAug4TruAxywgz3

Billy Connolly is refusing to let Parkinson's disease bring him down

Billy Connolly

Sunday, September 06, 2015 - 05:47 PM

The 72-year-old comedian was diagnosed with the brain condition in 2012 - in the same week he was told he had prostate cancer and had two hearing aids fitted - and although it has prevented him from playing the banjo he doesn't dwell on the degenerative impacts.

He said: "I am doing as well as can be expected. Some people get grim, but I do not."Funny doesn't go away it just changes slightly, maybe some people get grim but I don't. I think it is an attitude - you say screw it, let's get on with it.

"You cannot sit at home wondering about your symptoms. It is not going to go away.

"It has never crossed my mind that I am gonna die. What is dying anyway? It is just a light going out?"

'The Hobbit: The Battle of the Five Armies' actor admitted the disease is a constant reminder of his late friend Robin Williams who had the same condition before committing suicide.

During a radio interview promoting his Canadian tour, he explained: "It depressed me terribly. You don't find a way out of it. You find a place to put it where you can access when you want it. Like your mother or father's death you never get over it, you just find a place to put it.

"We were both angry about things.

"For instance the guy who gave me the final diagnosis that I had Parkinson's said it was incurable. Now I think that is terrible; he should have said we have yet to find a cure ... Leave me a little light on in the corner for Christ's sake."

http://health.einnews.com/article/284953091/JRA5FLqkn9d5gFMj