With mom in mind, Dallas triathlete headed to Hawaii

Multisport athlete Gretchen Weber, 45, of Dallas will be among 12 area triathletes heading to Hawaii next week for the Oct. 10 FordIronman World Championships.

Weber, a veteran of several Ironman events, earned a lottery slot into the premier endurance event. She then began raising money through the Janus Charity Challenge fund-raising program's Michael J. Fox Foundation for Parkinson's Research. She dedicated the race to her mother, who was diagnosed with Parkinson's disease.

"It's a real privilege to be at the same starting line as some of the fittest people on the planet," she said.

Weber said she trains with coach Jim Lukanich, one of three area Kona qualifiers who are triathlon coaches. The others are Della Irby and Ahmed Zaher. She trains with Gorilla Multisports, cycles and swims with Dallas Athletes and swims with Irving Swimmers.

"I train with different groups that keep expanding and changing," she said. "Heavens, I'd never get up and get to workouts if someone wasn't waiting for me and wasn't going to give me grief for my absence."

Her goal at Kona is "to have fun, finish, stay injury free, and if the tri-gods are with me, maybe even PR."

For more information go to www.parkinsonresearchfoundation.org

Parkinson’s disease info fair slated

Senior Concerns and the Hazel Hutchman Memorial Neuroscience Center of Reseda will present a “Living Well with Parkinson’s” information fair from 9 a.m. to 4 p.m. Sat., Sept. 26 at Senior Concerns, 401 Hodencamp Road, Thousand Oaks.

For those suspecting a possibility of Parkinson’s, the event will include individual physician screenings by appointment only. Movement disorder specialists Dr. Robert M. Hutchman and Dr. Jerome Lisk will conduct the screenings.

Experts in medical practice, nutrition, exercise, rehab therapies, home modification and social and veterans benefits services will give presentations at the fair.

Representatives of Los Robles Hospital Rehabilitation Program, Veterans Association, Red Cross, Neuroscience, LivHome, Yoga Works and Allied HealthCare Professionals will be on hand.

Completed Bike-a-Thon “Memphis to the Mountains” Parkinson Fundraiser

Supporters of PK Hope is Alive gathered Monday afternoon to celebrate and welcome home two cyclists who completed a 400-mile bike ride across Tennessee in support of research efforts for Parkinson’s disease…

Many thanks to the OakRidger for the wonderful coverage of our “Memphis to the Mountains” Parkinson fundraiser.

Action Walk to find a Cure for Parkinson's Disease

Action Walk to find a Cure for Parkinson's Disease will be held beginning with registration at 8:30 a.m. and the walk-a-thon begins at 10 a.m. Sept. 12 at Riverwalk Grand Pavilion, Naperville. Call (630) 933-4392 or e-mail apdamidwest@apdamidwest.org.

Parkinson's Disease Group offer a helping hand

HELP is at hand.

That is the message from the Louth and District Parkinson's Disease Society, a support group for those suffering from the disease and their families.

Chairman Michael Swift said: "We are trying to raise awareness that help is available to people and we welcome anybody from anywhere in North East Lincolnshire to get in touch.

"We have monthly meetings and lunch clubs, trips out and we also do a good deal of fundraising."

Parkinson's is a progressive neurological condition affecting movement including walking, talking and writing.

The group will meet again in January 2009, with a lunch club at the Wagon And Horses, in South Reston, near Louth, on January 15. There is also a table-top sale on Wednesday, November 26, at the Salvation Army Buildings, in Church Lane, Louth, from 11am.

For more information and resources about Parkinson's disease you can check out www.parkinsonresearchfoundation.org It's one of the most comprehensive websites on the internet for Parkinson's disease information.

Taking care of caregivers

Caregiving is exceedingly stressful and time consuming – and often leaves little energy for taking care of oneself.

The majority of caregivers are senior spouses of limited income and busy adult children with work and families to tend to.

Given those scenarios, it’s easy to see why so many caregivers wear out (and even die) before the loved ones they provide care for do.

Such compelling situations are behind why the Santa Clarita Valley Senior Center annually presents Caregiver Resource Day — a free community event aimed at lightening the load for caregivers through information, support, and tools for better self-care.

Approximately 175 people attended the June 20 seminar, which was funded in part through the Family Care Services of the Los Angeles County’s Area Agency on Aging.

With its title sponsor, Comfort Keepers In-Home Care, the event included enlightening speeches, a Pacifica Senior Living Santa Clarita-sponsored breakfast, care-giving related vendors, health screenings, and raffle prizes.

Hosted by the SCVSC’s Supportive Services Department, Caregiver Resource Day’s featured keynote speakers Joshua Grill, Ph.D., director of UCLA’s Mary S. Easton Center for Alzheimer’s Disease Research; James Makous, Ph.D., director of the Deep Brain Stimulation (DBS) Program for Parkinson’s at Boston Scientific Neuromodulation (BSN) in Valencia; and Judith Harris, M.A., M.F.T., psychotherapist, humorist, and facilitator of several SCVSC support groups, who also served as event moderator.

Alzheimer’s disease

An ultimately fatal, brain-destroying disease, Alzheimer’s affects 5.3 million Americans and accounts for 10 million unpaid family caregivers.

The No. 1 risk fact for developing AD is age.

“Medicine is helping people live longer lives, putting more people at risk to get Alzheimer’s,” said Dr. Grill, Associate Director of UCLA’s Deane F. Johnson Center for Neurotherapeutics.

“The number of people with AD is expected to triple in the coming decades, making it a national and international health care crisis.”

Research has made major advancements in recent decades to better understand this disease and what happens in the brains of patients afflicted, Grill noted.

“Two research goals currently predominate: moving diagnosis earlier, even before the beginning of symptoms, and developing new treatments that will slow the underlying disease process,” Grill stated.

“In combination, these two outcomes will let us essentially prevent the disease by identifying early and starting therapy to slow the pathological processes in the brain.”

Parkinson’s disease

Also a progressive brain disorder, Parkinson’s affects about 1.5 million Americans, impairing nerve cells, muscle function and movement. Symptoms include shaking (tremor), slowness in moving, stiffness, and balance difficulties. About 60,000 new cases are diagnosed annually.

Dr. Makous, who evaluates new technology within Boston Scientific’s Emerging Indications team, spoke about Deep Brain Stimulation (DBS). The procedure is successful in treating numerous movement disorders, including Parkinson’s and essential tremor. (The latter is a neurological disorder that causes uncontrollable shaking most frequently in hands or arms, but also in the head, voice, legs or trunk.)

With DBS, a small, surgically implanted, battery-operated medical device (similar to a pacemaker) delivers electrical stimulation to targeted areas in the brain.

This controls movement and blocks abnormal nerve signals produced by Parkinson’s and essential tremor. Makous presented a video in which renowned bluegrass musician Eddie Adcock underwent DBS to treat his disabling tremor — while strumming his banjo. As the procedure “fine-tuned” Adcock’s brain, tremors subsided and precise banjo playing resumed.

“We’ve had some amazing successes (with DBS),” said Registered Nurse Roberta Greenberg, Providence Saint Joseph clinical neurology manager. “The results are life-changing — patients can cut their medications, they suffer far fewer tremors and they regain motor skills. What’s really exciting about DBS is the potential for use in a range of disorders. Research is ongoing for applications in treating depression and even Alzheimer’s disease.”

Help for the caregiver

Finding humor and meaning in care-giving was the topic of Judith Harris’ talk titled, “We’re All Here Because We’re Not All There.”

Peppered with famous quotes and cartoons, Harris’s speech emphasized the importance of releasing guilt and self-blame, accepting the past, thinking optimistically, and spending time with people who make you happy.

Harris, a cancer survivor and SCVSC’s caregiver support group leader, included a gem from Rabbi Harold Kushner.

“Expecting the world to treat you fairly because you’re a good person is like expecting a bull not to attack because you’re a vegetarian,” Harris said.

Rose Di Benedetto, whose 83-year-old father Jose Hernandez has dementia and lives with her in Saugus, praised the event.

“It was very helpful,” she said. “I especially liked learning about resources for caregivers to come into the home. That’s good to know for when I have to go somewhere because I can’t always rely on my sons. They love their grandpa but sometimes they have things to do.”

Di Benedetto, herself a breast cancer survivor, said she appreciated Harris’ levity.

“I joke about everything. I have to,” she said.

Despite his normally sweet disposition, Hernandez can get agitated, which is common for people with dementia, the daughter said.
“My dad can get violent and raise his voice but that’s not him, it’s his illness,” she stated.

A stroke survivor with congestive heart failure, Hernandez attends the Senior Center’s Adult Day Care. The licensed program provides nurturing and social stimulation for people with Alzheimer’s, Parkinson’s, post-stroke or other conditions requiring constant supervision.

“He really likes it there,” Di Benedetto said. “It’s safe and they take good care of him.”

She also lauded day care for the respite it allows from caregiving.

“It gives me a break, and as much as I love my dad, that means a lot to me,” the daughter said.

Helping your Parkinson’s Client with Frozen Gait

Some clients with Parkinson’s disease (PD) may experience difficulty moving from one piece of Pilates equipment to another after completing an exercise. This inability to propel the feet is a symptom of PD and is commonly referred to as “frozen gait.” With most clients, their unconscious mind gives them the commands necessary for their body to move and perform the next action. With PD, this automatic feature can sometimes be interrupted.

Fortunately, we often can help our client “reboot” the system with a conscious command originating from another part of the brain. Once the body makes the first move, another part of the brain takes over for locomotion—like the jumpstart of a car battery getting the engine going again.

Mayo Clinic Parkinson Specialist J. Eric Ahlskog, Ph.D., M.D. provides some possible suggestions you may make to your client in The Parkinson’s Disease Treatment Book:

* Swing one leg forward. Think about swinging the leg rather than walking. Start with a long leg swing that will place that leg far in front of you (but not so far that you fall).
* Try goose-stepping. This was the marching gait of German soldiers. They would stiffly lock their knees and march by taking long stiff steps. Envision what they looked like and keep this thought as you take your first step.
* Think about a drum major’s marching step, raising one leg straight up off the ground before placing it forward. Envision that same movement when you get stuck.
* Think about a drill sergeant’s marching cadence: “one-two, one-two, one-two…” You might even count out loud. This might get you started and help you mentally envision a marching step.
* Thinking of a certain musical tune may be helpful. For example, a gliding first step may come more easily if you hum “Blue Danube” in your mind and imagine a ballroom dancer gliding in that same way. A boogie or rock and roll tune that brings a dance step to mind may also work.
* Find a target on the floor and step on it. Sometimes people imagine they are stepping on a fly in front of them. Look for an imaginary fly on the ground and try to crush it; this may get your gait started.
* A variation on this involves using a laser pointer to create a target to step on. If you point the laser light 1-2 feet in front of you and then think about stepping on that tiny lighted spot that may get you going. Laser pointers are used by professors and lecturers and may be purchased at bookstores.

Consult with your client to see what tool works best. After your client begins moving, it is also common for a PD client to have difficulty maintaining the tempo, or to freeze again upon slowing down or stopping. One of my clients will put his hand on his wife’s shoulder when they are walking together to maintain a sense of rhythm in his gait, which he at times loses on his own. Impressively, he still skis and will count the ski lift towers and sing a song to himself like “one, two, three…and” to get ready to initiate push off from the ski lift and transfer his weight over his legs. This counting also becomes useful in Pilates exercises, such as with leg circles in the straps on the Reformer, to maintain fluid movement. If you think that your client is experiencing inconsistent or stilted movement, try leading with your voice “circle down 1,2,3,4, circle up 1,2,3,4” to maintain the rhythmic feel.

Despite all your clever tricks, sometimes nothing works. When this happens, it is often a medication issue. Your client generally knows from taking medication when “on” and “off” efficacy times occur relative to the dosage and the time the medication was taken. Schedule your appointments based on medication peak performance to get the most out of a session.

Brent Anderson PhD, PT, OCS of Polestar Pilates has a great recommendation for working with PD clients. He suggests that you provide a, “successful movement experience that exceeds their expectation.” PD clients may not always have the perfect Pilates form, but acknowledging and praising what they can do will empower them to recognize their own accomplishments and strive for success in the future.

A working relationship with a PD client can be challenging for a Pilates instructor, but it is extremely rewarding when your client experiences improved function. Understanding the common symptoms, such as freezing gait, can help you know what to expect and to work with greater patience.

World PD Day Global Celebrations

Hong KongHong Kong

The Asia Pacific Region celebrated a fantastic World Parkinson's Disease Day, reaching 5,600 people with PD and carers in 8 countries including Hong Kong and Singapore.

Information, awareness and practical advice was the theme of all the celebrations reported widely by the media and supported by Novartis, contributing to the extensive awareness campaign.

In Hong Kong, a spectacular 1,450 participants (200 with PD) attended a Tai Chi event.

Parkinson's sufferers exercise brain, body

Parkinson's sufferers exercise brain, body

By ALECIA WARREN | The Coeur d'Alene Press

COEUR D'ALENE, Idaho – Another Wednesday, and another day the Fosters are alone among the endless shelves of porcelain in the basement of Wiggett's Antique Marketplace.

AdaMay is at her fluttery best, the tiny 76-year-old a windstorm of dusting spray, while LeRoy, 79, shuffles slowly in the back, revisiting stacks of rusty doodads.

The Coeur d'Alene couple was here yesterday, doing the same thing - and tomorrow they'll be back again, whether or not anyone shows up to sort through their clutter for sale.

Anything to stay busy.

See, constant activity - like sorting old figure skates and model airplanes at Wiggett's - keeps neurons in LeRoy's brain slip-sliding over familiar ground, retracing the pathways that his Parkinson's so often interrupts.

And on those days when the "freezing" happens - when his body winds down and pauses, struggling to recall how to start up again - the work fends off the panic that threatens to set in.

"It's all about keeping him moving, keeping his attitude up," AdaMay said. "We know it'll never get better - that's the first thing you learn.

"But we figure if we work with it, it will keep it from coming on too fast."

So she keeps them going at a steady clip: Exercise classes, dance classes, yard sales.

At the end of the day, it's hard to tell whether LeRoy's tired from the Parkinson's or the activities.

"I don't have much choice, when she gets too pushy," he muttered with a smile.

She nodded. After 55 years of marriage, what else would she do?

"I'd just like to keep him around longer."

Since LeRoy was diagnosed five years ago with the disease that hampers communication between the brain and motor functions, his wide gait has slowed to a gentle shuffle, his booming voice faded to a rasp, and his big paws are prone to a jittery shake.

They hone their focus on what their neurologist can peg for certain - relentless use of the brain and body will keep the progression at bay.

And luckily, Coeur d'Alene offers all kinds of opportunities.

Every Monday and Wednesday at 8 a.m. sharp they slog alongside senior citizens at Striders, the exercise group that meets at the First United Methodist Church.

Huffing through powerwalks and flexing muscles with band exercises are just what physical therapists prescribed for LeRoy's Parkinson's, he said, and AdaMay makes sure they never miss a morning.

"She might push him a little bit, only because she wants to keep moving so he's not to the point where he gets to be immobile," said Loretta Deitz, who helps run the group. "And exercise helps people with Parkinson's focus on something other than their disease. It keeps your mind focused and clear, and when you're active like that, you don't have a tendency to sit in a rocking chair and do nothing."

The Fosters are also regulars at the Coeur d'Alene Senior Center - Thursdays for line dancing, and Mondays for bingo.

Shuffling six or seven boards at once, LeRoy's brain has to fire up fast to keep up with the rules - no free spaces, no corners, create an arrow or blackout.

It's a big night when he can get through the whole night unaided.

"He used to be so good with numbers," AdaMay said, referring to his decades managing feed stores across North Idaho.

Now when the neurologist asks him to count down from 100 in threes, LeRoy's mind grasps for the simple numbers and winds up blank.

"That's frustrating, too," he frowned. "I know I can do that ... except I can't."

Best not to think about it, he said. The key?

"Stay busy."

Everything's a lot easier to digest thanks to the Parkinson's Support Group, too, the first Friday every month at the senior center, and third Monday at Kootenai Medical Center.

"It gives us the feeling you're not quite alone in this big bad world of Parkinson's," LeRoy said. "They're so upbeat - it's only Parkinson's, it's not cancer. We can work with that."

One by one, the 30-odd members update the current stage of their disease: Which of the googolplex of available medication is working, and what's causing pain, wooziness.

It's a Socratic wonder of scraping away the layers to an indelible disease - and with free cookies.

"I find people with Parkinson's - it's a different group, isn't it?" LeRoy said to AdaMay. "It's a caring group, and informational. How many people could you go up to and ask, what medication are you on? What doctor do you go to?"

Karen Goodman, who started the group three years ago for her father with Parkinson's, said the group's banter saved his life by introducing them to a crucial surgery.

"The doctors reduced his medication by like 75 percent, and now he can get out of low couches without any help," glowed Goodman, who lives with him as his caretaker. "It helps just to see there's hope, that some things can help."

AdaMay's hope lies within the calendar in their home - in keeping every square scheduled to the brim, with the knowledge she'll be alongside her husband all the way, in case the Parkinson's acts up.

"I don't mind," she said, patting LeRoy's hand. "If it never gets any worse, I know we can handle it."

She pauses and continues: "But it will though."

Regardless, they'll remain fixtures at line dancing, and bingo, and Striders.

And in between, Wiggett's - alone and scrubbing at a mess that will never be totally clean.

Anything to stay busy.

A poem called ‘Parkinson’s Disease’

Parkinson’s Disease

While spoon-feeding him with one hand

she holds his hand with her other hand,

or rather lets it rest on top of his,

which is permanently clenched shut.

When he turns his head away, she reaches

around and puts in the spoonful blind.

He will not accept the next morsel

until he has completely chewed this one.

His bright squint tells her he finds

the shrimp she has just put in delicious.

Next to the voice and touch of those we love,

food may be our last pleasure on earth -
a man on death row takes his T-bone

in small bites and swishes each sip

of the jug wine around in his mouth,

tomorrow will be too late for them to jolt

this supper out of him. She strokes

his head very slowly, as if to cheer up

each separate discomfited hair sticking up

from its root in his stricken brain.

Standing behind him, she presses

her check to his, kisses his jowl,

and his eyes seem to stop seeing

and do nothing but emit light.

Could heaven be a time, after we are dead,

of remembering the knowledge

flesh had from flesh? The flesh

of his face is hard, perhaps

from years spent facing down others

until they fell back, and harder

from years of being himself faced down

and falling back in his turn, and harder still

from all the while frowning

and beaming and worrying and shouting

and probably letting go in rages.

His face softens into a kind

of quizzical wince, as if one

of the other animals were working at

getting the knack of the human smile.

When picking up a cookie he uses

both thumbtips to grip it

and push it against an index finger

to secure it so that he can lift it.

She takes him then to the bathroom,

where she lowers his pants and removes

the wet diaper and holds the spout of the bottle

to his old penis until he pisses all he can,

then puts on the fresh diaper and pulls up his pants.

When they come out, she is facing him,

walking backwards in front of him

and holding his hands, pulling him

when he stops, reminding him to step

when he forgets and starts to pitch forward.

She is leading her old father into the future

as far as they can go, and she is walking

him back into her childhood, where she stood
in bare feet on the toes of his shoes

and they foxtrotted on this same rug.

I watch them closely: she could be teaching him

the last steps that one day she may teach me.

At this moment, he glints and shines,

as if it will be only a small dislocation

for him to pass from this paradise into the next.

Small-scale research taking aim at disease

Small-scale research taking aim at disease

BY CAROLYNE PARK

Posted on Sunday, April 26, 2009


University of Arkansas at Little Rock researchers are examining Parkinson's disease at its most fundamental level in hopes of finding a way to stop the progression of the debilitating disease.

Chemistry professor Jerry Darsey and doctoral student Sushma Thotakura are leading the one-year study that's being paid for with the help of a grant from the Michael J. Fox Foundation for Parkinson's Research.

Darsey, who's been at UALR since 1990, said the research is focused on addressing the disease in its earliest stages.

"Most of the treatments for Parkinson's right now are looking at the symptoms, not the cause," Darsey said. "We're attacking it from a molecular point of view."

But the team isn't working in a traditional laboratory or spending hours bent over microscopes, cell samples or petri dishes.

Instead, they're using advanced computer programs that can generate models of molecules and predict how they would interact with proteins in the brain linked to the disease.

First characterized by an English doctor named James Parkinson in 1817, Parkinson's disease is a chronic and progressive brain disorder that affects about 1 in 100 people older than 60, according to the National Parkinson Foundation.

An estimated 1.5 million Americans have the disease, and 60,000 new cases are diagnosed annually. About 15 percent of cases are diagnosed in people younger than 50.

People with Parkinson's can have a variety of symptoms, including uncontrollable shaking of a hand or limb, stiffness, slowed movement, muffled speech, difficulty with balance, depression and limited facial expression.

While there's still a lot to learn about Parkinson's, scientists know there's a strong link to genetics, Darsey said. Something in a person's genetic code causes errors in a protein called alpha-synuclein, causing it to become warped.

The malformed proteins gather together, forming abnormal clumps in a part of the brain called the substantia nigra, which plays an important role in controlling body movement.

The clumps - called Lewy bodies - block some of the brain's nerve cells, also called neurons, causing them to die or become damaged.

"Over time this prevents the neurons from producing the molecules they need to do their job," Darsey said.

That job is to generate dopamine, a chemical that allows communication between the substantia nigra and neurons higher in the brain. If enough neurons are damaged, a person's motor functions are affected and he develops the symptoms of Parkinson's disease.

Through their research, Darsey and Thotakura hope to find a molecule that will attach to the alpha-synuclein protein and either prevent it from becoming malformed or revert it back to a normal shape after it's been malformed.

If scientists can find a molecule to do one of those two things, they can prevent the proteins from damaging neurons in the brain and thus stop progression of the disease.

"Once a brain cell dies, there's no getting them back," Darsey said.

MODELING MOLECULES

While he specializes in molecular modeling and has worked in biomedical research before, Darsey said this is his first time working with Parkinson's disease.

He and Thotakura will use three computer programs for the project. Those programs will allow them to use what they know about existing molecules to generate models of new molecules that no one's ever built before.

They will then be able to use those models to predict how the molecules would interact with alpha-synuclein proteins in the brain.

Using computers, they can run tests on hundreds or thousands of molecules in a fraction of the time it would take to build the molecules in a laboratory, Darsey said.

"It takes months or years to synthesize a molecule," Darsey said. "We can do it as fast as we can run the program."

But they face several challenges in finding just the right type of molecule for the job, said Jon Wilkes, research chemist at the National Center for Toxicological Research in Jefferson, near Pine Bluff. Wilkes is an adviser on the UALR project, along with Dan Buzatu, a fellow research chemist at the center.

The first challenge is finding molecules of the right shape or structure to fit into receptors in the alpha-synuclein protein. They'll then have to study how each potential molecule would interact or bond with the protein.

If they find ones that have one of the two desired effects - to either prevent or reverse the protein's malformation - they have a third obstacle, Wilkes said.

The molecules must be able to pass through what is known as the "blood-brain barrier," a natural defense system that prevents certain chemicals and other molecules in the blood from passing into brain tissue.

Even a molecule able to revert the protein's malformation won't do any good for Parkinson's patients if the brain rejects it, Wilkes said.

If they find molecules that meet all the criteria, those should then be made and tested by pharmaceutical companies as potential treatments for Parkinson's disease, Wilkes said.

THE GRANT

The Michael J. Fox Foundation is providing a one-year $75,000 grant through its Research Rapid Response Innovation Awards program for Darsey and Thotakura to do their work. UALR is providing $25,000 more in funding and in-kind support.

Since it was founded in late 2000, the foundation has provided more than $142 million for Parkinson's research around the globe.

The foundation started the Rapid Response program in 2007 to provide seed money for scientists to start research, said Kirsten Carlson, the foundation's associate director of research programs.

"It operates on a rolling deadline, so if somebody has a great idea at any time during the year they have a mechanism to apply for funding from us," she said. "The focus is really on high risk but potentially high reward projects with the potential for significant impact in understanding of the disease or treatment for Parkinson's."

Todd Sherer, the foundation's vice president of research, said, "The idea is to allow the scientist, while that idea is fresh and exciting in their mind, to get some real-time support."

The grants are no more than $75,000 for one year. After a year, if the research is promising enough, the foundation will consider further funding.

One such project by researchers at Northwestern University in Evanston, Ill., studied whether a common high blood pressure medication also had the ability to protect neurons in the brain.

The Rapid Response grant allowed researchers to test their hypothesis in the laboratory. Positive results there led to an additional $2 million grant from the foundation, which is allowing them to test the drug on Parkinson's patients.

But even projects that don't lead to more research are valuable in furthering overall knowledge of the disease, Sherer said.

"It's OK for us if some of them end up testing their hypothesis and it doesn't pan out but it got tested in a rigorous way," he said. "We see that as being successful."

Carlson said the foundation has funded about 30 projects a year through its Rapid Response program, and only a handful of those go on to get additional funding.

Darsey and Thotakura's grant funding started in January and ends at the end of the year.

This winter, they'll present the results of their study at the Michael J. Fox Foundation in New York. Depending on what they find, they may apply for additional funding at that time.

As with all Parkinson's research, it's about taking little steps toward finding better treatments and ultimately a cure, Darsey said.

"We're making a lot of progress, but there's still a lot of progress to be made," he said.

Take care, caregivers

Sunday April 19, 2009
Take care, caregivers
By Lee Tse Ling

Caregivers should not be ignored in the treatment of Parkinson’s disease.

IN the National Parkinson Foundation Inc’s Parkinson Disease: Caring and Coping, Chaplain Chuck Meyer of St David’s Medical Center in Austin, Texas, the US, proposes a different way of looking at disease.

Conventionally, we liken managing disease to fighting a war, using phrases like “bringing in the troops” to “do battle” with drugs described as “magic bullets”. Even patients whose “battles” are over are considered “at peace.”

This is a very motivational approach when the war is short, or acute, and where there is still a chance the tide will turn in favour of the diseased. But what happens when the war is long and drawn out, where the disease is chronic like Parkinson’s, and the inevitable outcome death? Within a warlike context, any setback, whether large or small, can only be seen as defeat and failure.

This constant win-lose scenario can be very demoralising for both patients and their caregivers. So Meyer suggests looking at managing diseases like Parkinson’s as a collaboration or group project instead. One that patient, his caregiver(s), and healthcare and support workers can develop together to achieve “goals of comfort, dignity, and healing life-styles.”

Managing expectations

In this group project strategy, it is equally important to achieve the comfort, dignity and healing of the caregiver as that of the patient. This is because the person with Parkinson’s (PWP) will most likely have his expectations managed by his specialists (neurologists, nutritionists, psychiatrists, physiotherapists), but his caregiver may not.

In caring for their PWP, it is common for caregivers to feel:

·Inadequate and guilty for not being able to do more

·Frustrated, angry and worn out when faced with setbacks or the negative attitude of their PWP (who may be struggling with guilt, frustration and depression of his own)

·Shocked and horrified about having thoughts of leaving their PWP (especially if they are their spouses) or “wanting it all to end”

StarTwo entertainment editor Ann Marie Chandy for example, whose late mother Sosamah (Susie) Chandy was a PWP, often wrestled with feelings of guilt and failure while caring for her with her three sisters.

“We were always asking her to do more than she was able to. She said her physiotherapist never scolded her for anything, but we always did,” says Ann Marie. For example, when Susie was still able to walk, she would do so with her head bent painfully down due to muscle stiffness. Her children would tell her to look up so she could see where she was going and not bump into things. But Susie would be unable to straighten her neck.

The “scolding” came from concern that Susie would fall and hurt herself. Highly motivated and independent, Susie would insist on getting up and about – to go for walks outside, to attend church. But as her Parkinson’s progressed, she fell more often, despite the presence of her daughters, a maid and numerous walking aids (“a walker with wheels, a walker without wheels, a stick, a helmet...”).

Looking back, Ann Marie feels there are many things they would have done differently. She also feels that caregivers in Malaysia strongly need more support and information on how to care for their PWPs while caring for themselves too.

Caregivers need care too

It is normal for caregivers to feel lost and uncared for while providing so much care for their PWPs.

The first thing caregivers need to accept in order to have a positive relationship with their PWPs is they cannot heal them physically. Their PWPs will not be cured by care and attention, as there is currently no cure for Parkinson’s disease, and the severity of the condition will worsen over time despite their best efforts.

If you are a caregiver, don’t feel demoralised about what you cannot change. Focus instead on what you can by providing physical comfort, loving support, stimulation, and emotional healing.

Secondly, it is important for caregivers to schedule “me” time in which they can have a life away outside Parkinson’s and de-stress, eg by spending time on a hobby or going out with friends, and to not be too hard on themselves.

Thirdly, it is ok for caregivers to need – and ask for – support too. This can be as simple as having a friendly chat or “unloading” session with someone close when you’re down, or as profound as setting up your own local support group amongst other PWPs and caregivers you know in your area.

Find out more

Most of the information on coping with Parkinson’s disease available locally is patient-centric. Listed below are just some of the useful resources available online written with caregivers in mind.

For gentle encouragement on coping as a caregiver, visit the Michael J. Fox Foundation for Parkinson’s Disease Research at www.michaeljfox.org/living.cfm. Click on “For Patients and Caregivers” then click on “Guide for Caregivers” on the left navigation bar.

For a free e-copy of Parkinson’s Disease: Caring and Coping, visit www.parkinson.org. Click on “Publications” at the top navigation bar, and look under “Education Manuals” for “Caring and Coping”. This is a thorough guide for caregivers and PWPs on how to manage expectations, develop disease management action plans, sort out legal matters (finances, property, business), and living tips.

For more practical living tips with sections titled Especially for carepartners and lists of special equipment for PWPs, follow the same steps as for Caring and Coping and click instead on “Activities of Daily Living”.

For formal support, general information, inspiring true life stories and to get in contact with other PWPs and caregivers, contact the:

·Malaysian Parkinson’s Disease Association in Happy Garden, KL (03-7980 6685; www.mdpa.org.my)

·Negeri Sembilan Parkinson’s Association in Seremban (06-763 6275 / 06-764 4177; www.nsmps-parkinson.org)

Marci Silverman's ride for Parkinson's

Marci Silverman's ride for Parkinson's

Posted: April 11, 2009 11:44 PM

By Charlie Bartlett -
LAKE CHARLES, LA (KPLC) - Imagine riding your bike over three-thousand miles across the country just for fun, but what if you were riding for a cure? New York native Marci Silverman is racing her bike from coast to coast to fight Parkinson's disease and raise awareness along the way.

"What I really wanted to do was make a difference. I decided to raise money for the Davis Phinney Foundation which is for Parkinson's disease," said Marci Silverman.

Over the course of fifty-eight days and thirty-one hundred miles, Marci will travel from San Diego to St. Augustine, Florida. She decided to make the trip less than two weeks before and ride for Parkinson's; a neurological illness that affects movement and muscle control. Riding across country isn't the hardest part.

"The hardest part is actually keeping the momentum going for the fundraising while I'm on the road," said Silverman.

Marci's got the momentum and she's not riding alone. She's riding with the Bicycle Tour for Women.

"I think it's fantastic. She's trying to raise funds for a good cause," said Sherryl Schussler.

"It's very inspiring and wonderful to see all the causes that are being ridden for and amazing the amount of money can be raised," said Marni Harang.

Marci rides about sixty to seventy miles a day. Some days are harder than others but she's peddling along for Parkinson's, a disease she's very familiar with.

"My grandfather had Parkinson's and I got to see what that did to him. I also have a more recent connection. Two of my boyfriends' uncles both have Parkinson's and they got it when they were much younger," said Silverman.

Riding her bike from sea to sea, Marci hopes to improve the lives of people living with Parkinson's disease.

"To me it's a wonderful thing that I am able to do this. As tough as any day might be, a really hard climb, really cold, really hot or I don't feel like riding, I can do it. There are a lot of people out there with Parkinson's who would love to be able to do this," said Silverman.

With every mile, Marci is making a difference biking for Parkinson's. She hopes to reach her destination by April 30th.

Meanwhile, if you would like to help with Marci's cause and follow her daily progress, log on to her web site.

www.3100miles.com

Unique New Parkinson's Resource

Unique New Parkinson's Resource, Life With A Battery-Operated Brain, Offers Step-by-Step Patient Guide to Deep Brain Stimulation

Beyond answering the "whys" that arise in considering Deep Brain Stimulation Surgery, Hunt Christensen offers her unique perspective in this comprehensive book. LIFE WITH A BATTERY-OPERATED BRAIN is designed to be a highly readable guide for people with Parkinson's disease (PD), exploring the benefits of this particular surgery on many motor symptoms of the disease.
Let's stick wires into someone's brain, run voltage through it, and see what happens!
Deep Brain Stimulation is a process, not an event
I wrote this book as way of giving back to the community
DBS has given me back so much of my life! I want to share what I've learned from my own experience and others' to help inform the decisions being made every day by others looking for those same results.

Minneapolis, MN (PRWEB) April 15, 2009 -- What would prompt someone to say "Let's stick wires into someone's brain, run voltage through it, and see what happens!"? So asks activist and author Jackie Hunt Christensen in her important new book, LIFE WITH A BATTERY-OPERATED BRAIN: A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson's Disease (Langdon Street Press; April 2009; ISBN 978-1-934938-26-3; $16.95).

Beyond answering the "whys" that arise in considering Deep Brain Stimulation Surgery, Hunt Christensen offers her unique perspective in this comprehensive book. LIFE WITH A BATTERY-OPERATED BRAIN (www.lifewithbobbook.com) is designed to be a highly readable guide for people with Parkinson's disease (PD), exploring the benefits of this particular surgery on many motor symptoms of the disease. "Deep Brain Stimulation is a process, not an event," explains Hunt Christensen.

The author has firsthand knowledge of the procedure more commonly referred to as "DBS" and lived with Parkinson's disease for more than seven years before electing to be evaluated for DBS surgery. Ultimately, she was deemed a good candidate for the surgery, and DBS seemed like her only logical option--a choice that has been validated post-surgery, as Christensen now enjoys life with most of her motor symptoms well controlled. Parkinson's disease, the author is quick to point out, does not end, but DBS is meant to be a long-term treatment.

Now Jackie Hunt Christensen offers readers a resource that was previously unavailable: a step-by-step look at her own journey, as well as information on a typical evaluation process, medical statistics, questions to ask neurosurgeons, opinions from other DBS patients, the programming process for DBS, and much more.

"I wrote this book as way of giving back to the community," Hunt Christensen said. "DBS has given me back so much of my life! I want to share what I've learned from my own experience and others' to help inform the decisions being made every day by others looking for those same results."

LIFE WITH A BATTERY-OPERATED BRAIN is a must-read for those who are considering Deep Brain Stimulation--and for those who love them. Health professionals can also benefit from reading the book, as certain diagnostic tools and therapies may not be safe for use on DBS patients or require specific precautions.

Being released by Langdon Street Press today, LIFE WITH A BATTERY-OPERATED BRAIN will be available in bookstores and online at Life With a Battery-Operated Brain or Amazon.com.

Jackie Hunt Christensen is also the author of The First Year: Parkinson's Disease, An Essential Guide for the Newly Diagnosed and has published numerous articles and editorials regarding both Parkinson's and environmental issues. In 2006, she won the Milly Kondracke Award for Outstanding Advocacy from the Parkinson's Action Network in Washington, DC.

Jackie, her husband, and two sons ages 17 and 12, reside in Minneapolis.

A Cross-Country Journey for Parkinson's Research

A Cross-Country Journey for Parkinson's Research

Marci Silverman • Reader Submitted • April 6, 2009

WOMAN CYCLING ACROSS THE COUNTRY TO RAISE MONEY FOR PARKINSON'S RESEARCH, STOPS IN LAFAYETTE APRIL 12

A New York City woman is on her way across the country by bicycle with a mission: raising $20,000 to fight Parkinson's Disease, and raising awareness along the way.

Marci Silverman begins her 58-day, 3,100-mile odyssey in San Diego on March 6, 2009, and expects to finish in St. Augustine, Florida, on April 30. In that time she will ride across California, Arizona, New Mexico, Texas, Louisiana, Mississippi, Alabama and Florida.

She decided to make the trip less than two weeks before, and to fund-raise for Parkinson's, a neurological illness that affects movement and muscle control, to honor friends and family members who have the disease.

"For months, we've seen one bad-news headline after another: the mortgage crisis, banks imploding, unemployment skyrocketing," she said. "I thought it was time to do something positive, something constructive, and in a big way."

Silverman's ride is completely self-funded: 100 percent of the money she raises benefits the Davis Phinney Foundation. Phinney is a former pro cyclist living with the disease.

"Our foundation's mission is to help improve the lives of people living with Parkinson's disease today through research and programs related to quality of life therapies," said Amy Howard, Executive Director of the foundation. "Marci's ride across the United States is a wonderful way to raise both awareness and funding for Parkinson's disease research. We are thrilled to be the beneficiary of such a great event."

Visit Silverman's website, http://www.3100miles.com, to follow her progress daily and to sponsor her ride.

Actor to Speak on Parkinson's Disease

Actor to speak in Toledo of father's fight against disorder: Holly Robinson Peete, husband created foundation in his honor

(Blade, The (Toledo, OH) Via Acquire Media NewsEdge) Mar. 29--Holly Robinson Peete has fond childhood memories of her father, the original Gordon on Sesame Street.

"Your dad could not have a cooler job than going to work with Ernie and Bert," the actress told The Blade with a laugh in a recent phone interview.

Matthew Robinson, Jr., also wrote several episodes of Sanford and Son, and later became a writer and co-producer for The Cosby Show. The Philadelphia native was 46 when he was given a diagnosis of Parkinson's disease, a debilitating disorder that shortened his career -- and caused his death at age 65.

"He was an amazing guy who was really sort of cut down in the prime of his life," said Ms. Peete, who has been in several television series, including 21 Jump Street, Hangin' With Mr. Cooper, and For Your Love. She added: "Parkinson's disease just came along and just walloped him." Ms. Peete and her husband, former NFL quarterback Rodney Peete, are to be in Toledo on Saturday to be keynote speakers for the 12th annual Parkinson's Disease Symposium. They are to talk about the HollyRod Foundation they started in Mr. Robinson's honor in 1997, five years before his death, to assist people afflicted by the disease.

Discussing the latest advances in treating Parkinson's disease is another focus of the symposium, which is being put on by the University of Toledo's medical school, the former Medical College of Ohio, and the Parkinson Foundation of Northwest Ohio.


Much has changed in the last 10 years with using medication to treat Parkinson's disease, allowing patients to continue working and otherwise go on with their lives, said Dr. Lawrence Elmer, neurologist with the Parkinson's disease and movement disorder program at the former Medical College of Ohio.

"It's just so satisfying for me to know that, even as people get into their 60s, 70s, and 80s, that this is not a life sentence," said Dr. Elmer, who is hosting Saturday's symposium.

Not all doctors are well versed on medications used to treat Parkinson's, Dr. Elmer said. But Dr. Elmer is working with other Parkinson's specialists and organizations nationwide to develop a program to train nurse practitioners and physician assistants so they can spread the knowledge in doctors' offices, he said.

Deep brain stimulation surgery is an option for patients whose Parkinson's cannot be controlled by medication alone, and other procedures are being explored, Dr. Elmer said. New physical therapy and other regimens also have been developed to help people with Parkinson's, he said.

"Their lives really are improving," Dr. Elmer said of Parkinson's patients. "Our goal not only is to improve their lives, but to improve the lives of their spouses, their children, their friends." Ms. Peete said little information was available about Parkinson's disease when her father got his diagnosis in 1982. Using herbs, making dietary changes, and trying other treatments for symptoms were not discussed, the actress said.

HollyRod has raised more than $5 million so far to help people live with Parkinson's, Ms. Peete said. Plus, it has been able to get pharmaceutical companies such as Teva Neuroscience Inc., a sponsor of Saturday's symposium, to give patients samples of medications that typically would cost $500 to $900 a month, she said.

"I find some solace in the fact I was able to really help others," Ms. Peete said.

President Obama's decision to lift the federal ban on embryonic stem cell research gives hope to finding a cure for Parkinson's disease, Ms. Peete said. She said she also draws inspiration from others with Parkinson's disease, including actor Michael J. Fox and legendary boxer Muhammad Ali.

"There's something about people with Parkinson's ... They have a real amazing demeanor about them," Ms. Peete said. "When I see the champ, I think of my dad." Contact Julie M. McKinnon at: jmckinnon@theblade.com or 419-724-6087.

To see more of The Blade, or to subscribe to the newspaper, go to http://www.toledoblade.com.

St. Jude Medical Announces First European Patient Implants of the Libra Deep Brain Stimulation Systems for Parkinson's Disease

St. Jude Medical Announces First European Patient Implants of the Libra Deep Brain Stimulation Systems for Parkinson's Disease



ST. PAUL, Minn., Mar 26, 2009 (BUSINESS WIRE) ----St. Jude Medical, Inc. (NYSE:STJ) today announced the first patient implants of its Libra(R: 28.26, 0, 0%) deep brain stimulation (DBS: 23.9034, 0, 0%) system for treating the symptoms of Parkinson's disease, a progressive neurological disorder that affects a person's control over his or her movements and speech. The announcement was made at the European Association of Neurosurgical Societies and the Societe Francaise de Neurochirugie joint annual meeting in Marseille, France.

"We have initiated a limited launch of these systems in Europe and have recently completed implants in Austria, Germany and Greece," said Chris Chavez, president of the St. Jude Medical Neuromodulation Division. "We look forward to expanding the availability of these systems in order to help physicians meet the needs of their patients."

First implants were performed by Professor Francois Alesch, M.D., at the Medical University of Vienna, Vienna Austria, Professor Jan Vesper, M.D., at the University of Dusseldorf, Dusseldorf, Germany, and Professor Damianos Sakas, M.D., at the Evangelismos General Hospital, Athens, Greece.

"Deep brain stimulation is a safe surgical treatment for advanced Parkinson's disease," said Dr. Alesch, a professor of Stereotactic and Functional Neurosurgery at the Medical University of Vienna. "The availability of the Libra DBS systems allows us to choose the system that best meets the needs of the individual patient."

The European Parkinson's Disease Association estimates that Parkinson's disease affects approximately 6.3 million people worldwide. The disease usually develops in people between the ages of 40 and 70, with an average age of onset of 60 years. Parkinson's disease affects both men and women in almost equal numbers.

"In properly selected patients, deep brain stimulation therapy can provide extremely good results," said Professor Alfons Schnitzler, M.D., at the University of Dusseldorf. "For these patients, DBS may reduce akinesia, rigidity, tremor and levodopa-induced motor complications resulting in a significant improvement in their quality of life."

The Libra and LibraXP(TM: 65.48, 0, 0%) neurostimulators are constant current devices and feature the highest battery capacity of any DBS devices in their class, which may maximize the time between device replacement procedures. The systems consist of a neurostimulator - a surgically implanted battery operated device that generates mild electrical pulses - and leads which carry the pulses to a targeted area in the brain. The system functions in a manner similar to a cardiac pacemaker by influencing the irregular nerve signals responsible for the symptoms of Parkinson's disease. This therapy can be non-invasively adjusted by a clinician to meet individual patient needs.

The European CE Mark approvals of the Libra and LibraXP DBS systems represent the first deep brain stimulation system approvals for St. Jude Medical. Additionally, St. Jude Medical is developing other DBS applications to address a growing list of neurological disorders. DBS clinical studies are underway in the U.S. for depression, Parkinson's disease and essential tremor. For more information about these studies, visit www.BROADENstudy.com, www.PowerOverPD.com and www.PowerOverET.com.

About St. Jude Medical

St. Jude Medical develops medical technology and services that focus on putting more control into the hands of those who treat cardiac, neurological and chronic pain patients worldwide. The company is dedicated to advancing the practice of medicine by reducing risk wherever possible and contributing to successful outcomes for every patient. Headquartered in St. Paul, Minn., St. Jude Medical employs approximately 14,000 people worldwide and has five major focus areas that include: cardiac rhythm management, atrial fibrillation, cardiac surgery, cardiology and neuromodulation. For more information, please visit www.sjm.com.

Forward-Looking Statements

This news release contains forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995 that involve risks and uncertainties. Such forward-looking statements include the expectations, plans and prospects for the Company, including potential clinical successes, anticipated regulatory approvals and future product launches, and projected revenues, margins, earnings and market shares. The statements made by the Company are based upon management's current expectations and are subject to certain risks and uncertainties that could cause actual results to differ materially from those described in the forward-looking statements. These risks and uncertainties include market conditions and other factors beyond the Company's control and the risk factors and other cautionary statements described in the Company's filings with the SEC, including those described in the Risk Factors and Cautionary Statements sections of the Company's Annual Report on Form 10-K for the fiscal year ended January 3, 2009. The Company does not intend to update these statements and undertakes no duty to any person to provide any such update under any circumstance.

SOURCE: St. Jude Medical, Inc.

New Parkinson Treatment Hope

A simple and cheap device that stimulates the spinal cord with electricity could bring new hope to sufferers of Parkinson's disease, it has been claimed.
Early research in mice and rats using the approach has proved dramatically effective.
Experts believe if the technique works in humans it could provide a passport to normal living for thousands of Parkinson's patients.
The progressive disease affects motor nerves in the brain, causing tremors, loss of balance and muscle stiffness.
Drugs can reduce symptoms in the early stages but then cease to be effective.
Around 120,000 people in the UK suffer from Parkinson's, with 10,000 new cases diagnosed each year.
One radical remedy for the condition is deep brain stimulation (DBS), which involves inserting carefully placed electrodes deep into the brain. But the treatment is costly, invasive and not suitable for everyone.
The new stimulation therapy, targeting the spinal cord instead of the brain, would be much easier and cheaper to administer.
Professor Miguel Nicolelis, from Duke University in North Carolina, who led the research described in the journal Science, said: "We see an almost immediate and dramatic change in the animal's ability to function when the device stimulates the spinal cord.
"Moreover, it is easy to use, significantly less invasive than other alternatives to medication, such as deep brain stimulation, and has the potential for widespread use in conjunction with medications typically used to treat Parkinson's disease."
Copyright © 2009 The Press Association. All rights reserved.

Nanotech coating could lead to better brain implants to treat diseases

ANN ARBOR, Mich.---Biomedical and materials engineers at the University of Michigan have developed a nanotech coating for brain implants that helps the devices operate longer and could improve treatment for deafness, paralysis, blindness, epilepsy and Parkinson's disease.

Currently, brain implants can treat Parkinson's disease, depression and epilepsy. These and the next generation of the devices operate in one of two ways. Either they stimulate neurons with electrical impulses to override the brain's own signals, or they record what working neurons are transmitting to non-working parts of the brain and reroute that signal.

On-scalp and brain-surface electrodes are giving way to brain-penetrating microelectrodes that can communicate with individual neurons, offering hope for more precise control of signals.

In recent years, researchers at other institutions have demonstrated that these implanted microelectrodes can let a paralyzed person use thought to control a computer mouse and move a wheelchair. Michigan researchers' say their coating can most immediately improve this type of microelectrode.

Mohammad Reza Abidian, a post-doctoral researcher in the Department of Biomedical Engineering who is among the developers of the new coating, says the reliability of today's brain-penetrating microelectrodes often begins to decline after they're in place for only a few months.

"You want to be able to use these for at least a couple years," Abidian said. "Current technology doesn't allow this in most cases because of how the tissues of the brain respond to the implants. The goal is to increase their efficiency and their lifespans."

The new coating Abidian and his colleagues developed is made of three components that together allow electrodes to interface more smoothly with the brain. The coating is made of a special electrically-conductive nanoscale polymer called PEDOT; a natural, gel-like buffer called alginate

Helping Parkinson's disease sufferers live a better life

Parkinson's disease affects an estimated one in every 500 people in Europe – it is the second most common disease after Alzheimer's. With so many afflicted, one research team is trying to help people with Parkinson’s living at home to overcome the social exclusion its symptoms can cause.
A degenerative disease of later life with widely varying symptoms, Parkinson's disease (PD) can result in poor mobility or paralysis, speech disorders and depression, causing people to drop out of life's flow. It is an idiopathic disease, and researchers suspect both genetic causes and environmental pollution as contributory factors.

Partners in the ParkService initiative co-funded by the European Commission’s eTEN programme are testing a set of services that could help sufferers better manage the disease symptoms. This eInclusion project, which began in August 2004 and ends 31 March 2007, involves research institutes in four countries, Italy, Germany, the UK and Greece, in testing three prototype services.

A fascinating online video shows a stooped man with Parkinson's disease shuffling with difficulty across an apartment. After briefly observing a line of rectangles of white paper lined up on the floor before him, he can suddenly stand up straight and walk briskly over the paper trail. But at the end of the paper trail, the man stoops again and resumes shuffling.

The video demonstrates how visual markers known as ‘cues’, like these simple pieces of paper, can help people with Parkinson's disease do things that their damaged neuromotor libraries have made much more difficult, says Reynold Greenlaw at UK-based Oxford Computer Consultants Ltd., coordinator of the eTEN co-funded ParkService project.

Virtual pieces of paper
ParkService is "testing the European market for a device that lets a person with Parkinson's see the virtual equivalent of those pieces of paper, wherever he walks," says Greenlaw. That device, called INDIGO, is the core of ParkService's prototype set of telematic tools, which aim to help PD patients to live and communicate with both clinicians and others.

INDIGO is a pair of virtual-reality eyeglasses equipped with electronics and a rechargeable battery, and a belt-or pocket worn mini-computer that can be configured remotely. "A monitor in the glasses puts moving stripes in the person's peripheral vision, providing that helpful visual cue," says Greenlaw.


Originally named ParkWalker, the INDIGO eyeglasses won the European Commission’s Assistive Technology Award in November 2004. They were originally developed under an earlier IST-sponsored project, PARREHA, which lead to the setting up of a joint company, ParkAid, which is the motor of the ParkService consortium.

ParkLine, another mature prototype, will give patients a secure, easy-to-use way to use their televisions to communicate with their physicians and other disease sufferers. They can type in symptom diaries using a television remote control or send video from a webcam. ParkLine is designed to keep bandwidth low in order to keep costs down.

Greenlaw says that, "We received positive feedback on ParkLine following a group presentation at the Schneckenhaus, a large group home in Germany for people with Parkinson's. Now we're working on interface customisations that people have asked for, like language and bigger buttons on the remote control."

The browser-based ParkClinic tool allows doctors to receive ParkLine messages and images from their patients. "This is the system's least challenging part. Doctors have tried it at the Institute of Neurology, but not formally," says Greenlaw.

Rollout planned for 2007
The INDIGO system costs 2,000 euros. ParkService support will be paid for in a variety of ways. "In Germany private-health insurance and patient organisations may pay for it. In the UK we will try to get backing from the National Health Service, and in Italy, patient organisations will pay," explains Greenlaw.

ParkService is a market validation project, and rollout is set for March 2007. "We'll start in Germany, because they have a unified structure for dealing with people with Parkinson's, as well as a very developed internet infrastructure and Europe's largest population," says Greenlaw.

"For now, our objective is to use feedback from the ParkService pilots to fine-tune the tools. Then, our next step is to get them into people's homes and doctors' offices in larger numbers," says Greenlaw.


Source: Based on information from PARKSERVICE

Riding with a purpose

Parkinson's patient raising awareness, funds for research

Wednesday, February 25, 2009

When Larry Bowen's friend suggested that they ride bicycles across the country, Bowen asked, "Why?"

"I never thought I would do something like this, but now we can do it for something important," he said.

Bowen, 57, of East Pennsboro Twp., and his friend, Ed Thomas, are taking part in a 2,600-mile, coast-to-coast bike ride sponsored by the Davis Phinney Foundation to promote awareness of Parkinson's disease and to raise funds for research.

They will leave Carlsbad, Calif., on March 20 and will bike through eight states -- California, Arizona, New Mexico, Texas, Louisiana, Mississippi, Alabama and Georgia, arriving in Brunswick, Ga., around April 30.

Bowen, a retired leatherworker, knows how important Parkinson's research is to the more than 1 million Americans afflicted with the disease. He was diagnosed with Parkinson's disease 17 years ago.

"This isn't about me," Bowen said. "It's more about helping find a cure for Parkinson's and encouraging those who have the disease that they can do things despite having the illness.

"This makes me realize that I can take on a challenge. If I can ride coast-to-coast with Parkinson's, they can do the normal things in life. Life would be boring without challenges."

Bowen and Thomas will ship their bicycles to Indiana, where they will be picked up and shipped to California. Bowen's 15-gear Trek touring bicycle is in the shop, being outfitted with new tires and having worn parts replaced.

"I decided to have some repairs done now, rather than have to do them along the side of the road," he said.

Bowen said he has a lot of support from family and friends in coping with his illness. Many of them already have made donations in support of the bike ride. Supporting Parkinson's research is as important to them as it is to him, he said.

Parkinson's disease is a brain disorder with no known cause and no cure. It occurs when a specific group of brain cells begin to malfunction and die. These cells produce a chemical called dopamine, a chemical responsible for telling the body how and when to move.

When approximately 80 percent of the dopamine-producing cells are damaged, the symptoms of Parkinson's disease appear.

The key signs of Parkinson's are tremors or shaking, slowness of moving, rigidity or stiffness and difficulty with balance.

"By the time you get your first tremor, you have already had Parkinson's for five years," Bowen said. "Someone finally put the name on what you are feeling."

Parkinson's disease affects men and women in almost equal numbers, according to the National Parkinson Foundation. It shows no social, ethnic, economic or geographic boundaries. In the United States, it is estimated that 60,000 new cases are diagnosed each year, joining the 1.5 million Americans who already have it. While the condition usually develops after age 65, 15 percent of those diagnosed are under 50.

There are a number of effective medicines that help ease the symptoms of Parkinson's disease. The medicines most commonly used will attempt to either replace or mimic dopamine.

Several new medicines are being studied that could slow the progression. Many promise to improve the lives of people with Parkinson's disease.

The Davis Phinney Foundation, based in Boulder, Colo., was established in 2004 by Davis Phinney, a professional cyclist who was diagnosed with Parkinson's at age 40. Phinney was the first American to win a stage of the Tour de France, the world's most popular cycling race.

The foundation is focused on promoting and funding innovative and progressive research into the benefits of quality-of-life therapies on Parkinson's disease.

"There is no cure for Parkinson's, but there is plenty you can do about it," Bowen said. "First of all, stop complaining as if you are the only person who has ever had it. Think about using your disability to make others more comfortable instead of worrying about yourself."

Bowen and his wife, Beth Acri-Bowen, went skydiving for the experience of jumping out of an airplane. They also have sailed the Caribbean, living off the reef and depending on what they catch for all their meals.

Bowen and Thomas have completed several "centuries," 100-mile bike rides, including one across parts of Ohio and Pennsylvania.

The coast-to-coast ride will be his longest bicycle trip, Bowen said. The participants will camp out or stay in schools, churches and an occasional motel.

"I feel fortunate to have the ability to do this," he said. "I'm sure there will be days when we don't seem to be making progress and I will want to quit, but I expect to stick with it."

Bowen said his hope is that his participation in the bike ride will make others aware that time has a way of erasing opportunities.

"Having Parkinson's makes you realize it's time to grab hold of your dream and do it before it gets out of reach," he said.

Patriot-News

Scenes from a Struggle with Parkinson's Disease

by Jesse Hardman

Weekend Edition Saturday, NPR, September 9, 2006 · After some initial hesitation, freelance reporter Jesse Hardman set out to tell the story of his father's struggle with Parkinson's disease. You'll find more information about this piece, and a discussion board, at Transom.org. There, Jesse and his parents, Bob and Susan Hardman, give background on the story.

Jesse Hardman

I have wanted to document my dad's battle with Parkinson's for a long time. As many reporters can attest, it can be a hard transition from the detached impartiality required for most journalism to documenting someone close to you. For nearly 10 years, thoughts of interviewing my dad felt forced -- and frankly, the idea scared me. Did I really want to know the difficult details of his battle with the disease? On a personal level, I had gotten into the habit of assuming he was OK, and only drawing from his general successes, not what is inevitably a progressive breakdown of the body.

While visiting my parents a few months ago, I woke up one morning and saw my dad was getting ready to go to a Parkinson's support event. I grabbed my recorder and a microphone and joined him.

Bob Hardman

I would say three things keep me going: my faith, exercise and a sense of humor. I have found meditation very therapeutic, as well as quieting of my body and centering my spirit. It is a constant in my life. I also find exercise walking, bike riding (which is sometimes easier than walking), yoga (which calms my body) necessary. "If you don't use it, you lose it!"

My sons help me with a sense of humor, like "Dad, you can throw away your electric toothbrush." Other than that, I keep trying ways, many alternatives, although I like to call them complimentary therapies: i.e., acupuncture, electro-magnetic therapy, glutathione, healing touch, reiki, massage and am now stepping into ayurvedic therapy. All have brought me into a wonderful smorgasbord of care that this world has to offer, some were more helpful than others, but all helped. I am blessed and so are you to have so many avenues to wholeness (holiness).

Susan Hardman

I am very proud of my husband, and sons for their courage and openess in sharing our journey with others. We laugh and joke and find humor a must. Our grandsons ask questions about why grandpa shakes and they get good answers, then they just go about their business.

I honestly don't know how I would be if I were in Bob's shoes. Probably much the way I am today: at times fiery and impatient, and at others patient and understanding. I am someone who likes to think there is nothing I can't do, or at least try, and Parkinson's gives me an opportunity to take on even more. Bob can't do it. I will. I'll drive 3,000 miles so we can go East. I can take care of the three grandchildren by myself. I'll learn to drive the boat, I need better balance, I need time out, I can say no.

Maybe this is one of my biggest learnings: What do I need to enjoy my life and still be a caring helpmate? This question is front and center on my plate. Listening to this [story] again today was very emotional for me. I was able to get inside our life in a way I can't when I am at home and in action. It had me being still and very thoughtful.

Jesse Hardman

What ultimately made me want to do more with these recordings than just a family archive was the actual sound of my dad's tremors. I feel like this sound in and of itself explains as well as any words what it is like to be in my dad's body. You can probably come up with a sound to represent most physical illnesses, but few as powerful as the sound of Parkinson's. I want people, regardless of what side of the stem-cell debate they are on, to hear that sound, to feel it, to Hear what is at stake for my dad.

Transom Discussion Board for "Bob Hardman: A Body in Motion"

This story was produced by Jesse Hardman, with help from Jay Allison

Gary’s Guys is for men who have Parkinson’s disease or are caregivers of PD patients

By JILL SHERMAN, DAILY SUN

THE VILLAGES — The denial that can come with the diagnosis of a disease often makes a person feel lonely.

Gary Ingram ultimately found comfort when he sought the company of people who, like Ingram, have Parkinson’s disease.

“I didn’t want to go to a support group because I didn’t want to be around sick people,” Ingram said. “(I found) just the opposite is true.”

There is strength in numbers. Ingram, who has had PD for 11 years, learned that discussing issues and sharing information gives PD patients the determination to stand up to their disorder.

All of this bolsters the devoted caregivers of PD patients, too.

“It helps me understand more what’s happening with my wife,” Village of Woodbury resident Sylvan Peterson said. “There’s a wealth of information these people have.”

Ingram is the organizer of Gary’s Guys, a men’s group for PD patients and the caregivers of PD patients, which meets every Monday morning at Chatham Recreation Center. Attendees drink coffee, eat doughnuts and talk.

“It’s just for the guys,” said Ingram, a Village of Chatham resident. “You have a sense that you can say anything you want in front of the men.”

According to Ingram, there are about 16 men in the group. They come from a variety of backgrounds — there is a nuclear physicist, a Corvette designer and a school administrator among them — illustrating that PD is nondiscriminatory about whom it strikes.

“These are down-to-earth guys,” Ingram said.

Like the man who formed the group, members are trying to face PD with positive attitudes.

“They’re just upbeat guys,” Ingram said.

Village of Glenbrook resident Frank Hof said he never feels apprehensive about the gatherings.

“This tends to be very informal,” Hof said. “There is no agenda.”

Because he is a caregiver for his wife, Hof appreciates the chance to discuss the problems he faces at home and learn how others have solved similar situations. It is also uplifting just to get some fresh air.

“Being a caregiver is a full-time job,” Hof said.

Gary’s Guys offers a two-hour time frame of socializing every week, which does a world of good for everyone involved.

“If you have Parkinson’s, you get kind of down and start isolating yourself,” said Ingram, who was bedridden for three months a couple of years ago. “(Gary’s Guys) gets you out (of the house).”

Newcomers are always welcome to join Gary’s Guys.

Male residents of The Villages who either have Parkinson’s disease or are caregivers of people with Parkinson’s disease are invited to join Gary’s Guys at 9 a.m. Mondays at Chatham Recreation Center. Call the recreation center at 753-4570 for information.

Jill Sherman is a reporter with the Daily Sun. She can be contacted at 753-1119, ext. 9253, or jill.sherman@thevillagesmedia.com.

Parkinsons Diagnosis, Just Exactly What Is The Process?

Diagnosing Parkinson’s Disease is, as with any other condition, a complex and uncertain process. With symptoms very similar to that of other neurological disorders, including a variety of different forms of the disease itself, the Parkinsons diagnosis requires an physician experienced in dealing with the condition first hand, and an ability to differentiate between the symptoms set synonymous with this and other conditions. Some related conditions take their course very rapidly, whereas some take time to develop. Similarly, some conditions are always present, whilst some are acute, therefore it is essential for the initiation of treatment that patients are diagnosed effectively and correctly. The patient may require observation for a period of time before proper Parkinsons diagnosis can be made, as there are no laboratory tests which can indicate its presence for certain.

The doctor will firstly begin his patient evaluation by looking at his medical history and conducting a general health check to see if there are any obvious signs of this, or any other condition in the past, or at present. A neurological test can be conducted to assess the range of movement of the patient, and highlight any problems which may arise and point towards the presence of Parkinsonism.

There are at present no diagnostic tests to identify the presence of Parkinson’s. Blood tests will seldom yield any results and depend on the specific nature of the patient’s condition. On the same vein, brain scans will very rarely reveal any conclusive results as any brain changes are chemical and would therefore be neigh on impossible to detect through traditional scanning methods. The best way in which diagnosis can be reached is through the experience and judgement of the physician, who must have dealt with cases of the condition and other related neurological disorders before to have a realistic chance of correct diagnosis. The diagnostician should be expressly familiar with the key characteristics of each potential condition, and take time to diagnosis to the best of his abilities. That way, treatment can begin immediately for the correct problem, and the patient can benefit from alleviation of the symptoms he is suffering, or will be suffering in the future. Additionally, this provides a good opportunity to discuss with the patient the realistic goals and longer term prospects, although again this is very much dependent on a correct and conclusive Parkinsons diagnosis.

If you are at all concerned about Parkinson’s and feel you have experienced some of the trademark symptoms, or alternatively a family member has previously been diagnosed with the condition and you feel you may be susceptible through genetics, it is strongly advisable to consult your doctor as soon as possible. This will give him the best chance of successful diagnosis, and will give you the best chance of beginning treatment as soon as possible. Although Parkinson’s can be a disabling condition, it can be well treated to make life comfortable for the patient, and there are many options to try and dampen the symptoms, so the best policy is always to consult your physician as soon as possible.

Clive Jenkins recommends the Parkinsons Disease Help Online website which provides comprehensive information on all aspects of Parkinson’s Disease. To find articles, tips and free information and advice check out the site here:
http://www.parkinsonsdiseasehelponline.com/

Parkinson’s Disease Online Radio Talk Show Celebrates Its One-Year Anniversary

January 19, 2009, Chicago, USA: Last year in 2008, Rich and Kim Rozek had decided there was a need for an outlet that would help to increase the awareness needed for Young-Onset Parkinson’s Disease (YOPD) and all the people living with this disease. The Rozek’s connection to the disease was close and personal. Rich, age 48, had been diagnosed with Parkinson’s almost nine-years ago. He also stopped working in 2006, which made life a bit of a struggle.

Through these past years, Rich and Kim have experienced first-hand the emotional and financial roller coaster ride that comes with the disease. They survived the past few years by having patience and becoming quick learners, regarding doctors, prescriptions, being cash-strapped, and the more than occasional wrench thrown into their future plans.

The couple initially thought about raising money for research and awareness, like the numerous other PD foundations out there, but decided in the end to do what they do best…TALK!

Soon after this epiphany, “Parkinson’s Disease Talk Live” was born! The concept was to do a one-hour, weekly online radio talk program that featured PD news, advice, and the occasional guest, plus callers with questions about living with the disease. What it turned into was a reality show, with the couple opening their life and experiences online for all to listen to, and learn from.

Over the initial first year, their listeners have increased, and the download’s have been in the thousands! The couple discovered their gut instinct was correct - there is a real need for a program that discusses the many facets of Young-Onset Parkinson’s Disease.

Now in the second year of “PD Talk Live,” they decided to start a second unique program online for those with YOPD – an online support group called, “The PD Cyber Support Group.” “We thought this was really needed. When you have YOPD, you’re typically between the ages of 30 to 55 years, and usually not prepared for PD in this stage of your life! You might have responsibilities like a spouse, children, a job, and financially not prepared! You might not have a local support group to attend, and if you do – you might not have the time or energy to attend! That’s where we come in. We share our experiences, and give them someone to talk to. Plus our support is convenient – it’s as close as your computer,” said Rich.

PD Talk Live is on every Thursday at 11AM to 12PM (CST) on Blog Talk Radio. The PD Cyber Support Group meets online the first Tuesday of every month on Talk Shoe from 7PM to 9PM (CST). For more information, you can go to their website: www.PDTALKLIVE.com

Parkinson's Disease: A Complete Guide for Patients and Families

Author: William J Weiner

Recent innovations, including deep brain stimulation and new medications, have significantly improved the lives of people with Parkinson's disease. Nevertheless, medical, emotional, and physical challenges remain. The second edition of this accessible and comprehensive guide provides crucial information for managing this complex condition, including details on the use of medications, diet, exercise, complementary therapies, and surgery.

The second edition includes new information about:

• The genetic and hereditary pattern of the disease

• Medications and uses of established medications

• Other approaches to treating the symptoms of Parkinson's

• Juvenile-onset Parkinson's disease

• Normal pressure hydrocephalus

• The effects of fluctuating hormones on disease symptoms

• Fetal cell transplants and porcine cell transplants

• The nutritional supplement Co-Enzyme Q10

William C. Koller

There is a definite need for this timely book. It is one of the best I have seen for people with Parkinson's disease and for their families.

Publishers Weekly

As a result of actor Michael J. Fox's disclosure that he has Parkinson's disease, public discussion about both the symptoms and treatment of this illness has heightened. This attention is important, according to these authors, all specialists in the treatment of Parkinson's and other neurological disorders, because it is a progressive, chronic disease whose symptoms including trembling, uneasy gait and loss of dexterity mimic those of other diseases, which can often lead to misdiagnosis. One of the most frustrating aspects of Parkinson's is that it manifests itself differently in each of its victims, which makes coping with this disease particularly challenging. Nonetheless, what is most important, aver the authors, is that both Parkinson's patients and their families have access to the most up-to-date treatment including new drugs, surgery and other therapies (diet, speech therapy, acupuncture), and with compassionate, clear writing, they provide an excellent overview. Leaving no stone unturned, Weiner, Shulman and Lang also advise patients about less clinical but equally important matters such as dealing with health insurance companies and informing employers. Particularly useful for readers are the Q&A section and a comprehensive resource directory. Obtaining an accurate diagnosis is the first step, after which patients and their loved ones will find this practical guide the perfect complement to a physician's care. Illus. (May 19) Copyright 2001 Cahners Business Information.

Doody Review Services

Reviewer: Daniel B. Hier, MD (University of Illinois at Chicago College of Medicine)
Description: This is a compact well-written introduction to Parkinson's disease written for patients and their families.
Purpose: The authors have set out to provide patients with a useful guide to Parkinson's disease.
Audience: It is aimed at patient with Parkinson's disease and their families.
Features: Using a question and answer format, the authors have created a general market book that addresses many important issues related to Parkinson's disease including diagnosis, treatment, and disease complications.
Assessment: This is a useful book for patients with Parkinson's disease and their families. It is written in a clear fashion by experts in the field. Although technical terms are used, they are carefully defined and explained. The book is quite readable. Physicians taking care of Parkinson's disease patients can recommend this book to their patients with confidence.

Library Journal

Parkinson's disease affects over one million Americans and has recently has received notoriety thanks to actor Michael J. Fox's diagnosis. Weiner, director of Maryland Parkinson's Disease Center, presents known facts and clarification about this degenerative neurological disease. Physical, behavioral, and psychiatric signs and symptoms exhibited during mild, moderate, and advanced stages of the disease are examined, as are diseases that can mimic Parkinson's. The author emphasizes the questions patients should ask and the tests they should undergo before a diagnosis is made, and he outlines drug and surgical treatments, including alternative and complementary therapies. Somewhat clinical in tone, this title is more comprehensive than the American College of Physicians' Parkinson's Disease (DK, 2000), but it is not as effective as Caring for the Parkinson Patient, 2d ed., edited by J. Thomas Hutton and Raye Lynne Dippel (Prometheus, 1999), in providing information on daily coping skills and psychological adjustment to the disease. Still, the guide is excellent for its current medical and research information for the newly diagnosed. Janet M. Schneider, James A. Haley Veterans' Hosp., Tampa, FL Copyright 2001 Cahners Business Information.

Rating

3 Stars from Doody

EFGCP-AREC Workshop on Research Ethics Committee Complex Cases

The Older Participant

15 January 2009 - Basel, Switzerland

This is a joint event arranged by the EFGCP Geriatric Medicines Working Party and the UK Association of Research Ethics Committees, recognising that sponsors may sometimes find the workings and opinions of research ethics committees very difficult to accept, whilst the members of such committees themselves may well find applications and responses from sponsors and investigators equally difficult to manage.

This workshop will give an opportunity for these difficulties to be freely discussed by representatives of RECs, sponsors and investigators, focusing on the Older Participant and will hopefully lead to some conclusions as to how best these difficulties should be addressed or even avoided.

For further information: www.efgcp.be or contact the EFGCP Secretariat (tel: +32.2.732 87 83 – conferences@efgcp.be ).

Art Without Boundaries Making a Difference

Through the simple acts of singing, movement , painting and storytelling, Dayle Sundberg of Estelline is helping individuals with brain disorders bring everyday, pleasurable moments into their life.

Sundberg has started the first South Dakota chapter of Art Without Boundaries after completing an extensive online course and doing her hands on training with founder and mentor Noell Hammer. This is the first chapter in South Dakota, but there are chapters in six other states.

Art Without Boundaries uses MnemeTherapy, a cutting-edge whole brain therapy for individuals with brain disorders or issues. "This is not art therapy," said Hammer, "but rather a way to speak to the brain in a different way."

Hammer and Sundberg visited the Golden Living Center in Lake Norden and the Estelline Nursing and Care Center earlier this month, spending 30 minutes with willing residents. The session started out with the singing of a familiar song, left-to-right body movement, the painting of a picture and ended with storytelling about the painting .

"I had no idea how it would affect my heart," Sundberg said of her experience with her first two patients. As she worked with a stroke patient who had difficulty speaking, by the end of the 30- minute session the patient was getting some vowels and sounds out and was able to say "I love you."

"Everyone was weeping for joy with the hope it gave," said Sundberg. "I didn't' realize how big of an impact it was going to be."

Hammer stresses that is not the artwork, but the process which strives to stimulate sustained attentive focus.

"Our goal is to provide a rewarding experience . We are not trying to cure the patients, but provide every day pleasure," Hammer said.

But during the process many of her clients over the past 10 years, ranging in age from 2-107 , have had incredible results, including amazing paintings, significant improvement in verbal skills, mobility, combativeness, spatial acuity and understanding instructions.

"The therapy is something I would have wanted to do with my mom but couldn't ," Sundberg said of her mom, who spent the last five years of her life with injury-related dementia. "It would have been wonderful to get a glimpse of her again."

Having a parent with a brain injury was one of the reasons Sundberg chose to complete the training and open an Art Without Boundaries chapter in South Dakota.

"It was a good fit for me as I love old people and have had experience working with dementia patients," Sundberg said.

Sundberg has a Bachelor of Fine Arts from the University of South Dakota with a specialization in sculpture and also saw this as a natural progression for her art.

MnemeTherapy works on individuals with all types of dementia: Alzheimer's disease, Huntington's disease, Parkinson's disease, stroke victims, Pick's disease, (frontotemporal dementia), Lewy Body disease, and with younger children and adults with Asperger syndrome, pervasive developmental disorder, ADD, ADHD, autism, and cerebral palsy.

Caregiving institutions such a nursing homes and assisted living center, as well as private individuals with short-term rehab or disorders, are encouraged to make an appointment with Sundberg by calling her at 605-873-3030 or 605-769-0811 .

For more information about MnemeTherapy and Art Without Boundaries, visit http:// www.artwithoutboundaries.org or www.artwithoutboundaries.org/DS.html.

Surprise for charity champion

A SURPRISE party was thrown for a gym boss who spreads festive cheer all year round — by raising cash for charities.

Charity champion Ann Woods of Bolton Town Centre-based Motorcise has ended the year raising £6,600 for a number of needy organisations.

And that comes on top of running a gym that specifically caters for women with serious medical conditions, from Parkinson’s Disease to Multiple Sclerosis and arthritis.

Two months ago Mrs Woods, aged 56, bought the gym to ensure specialised facilities remained for her members.

But the gym also helps her to ensure lots of money is raised for worthy groups by acting as the venue for fundraisers, while staff and members frequently take part in raffles and other events.

Mrs Woods said: “I’ve seen first hand through my members the important work charities do in funding research into medical conditions and supporting those people.

“These charities get no funding and depend solely on donations.

“This is why we started fundraising a few years ago.”

Fundraisers have included a Christmas Variety Show, theme nights, sponsored swim and raffles.

“Anything worth celebrating, such as Easter, the birthday of the gym, or Christmas all become fundraisers.

“Sometimes having a medical condition or caring for someone who has can be isolating and having events can be important social events. We even play bingo in the gym,” said Mrs Woods.

She added: “It was brilliant being surprised like that, but this money could not be raised without the help of my team and the members who always show their support.”

Personal trainer Heather Taylor, aged 50, from Belmont, described Mrs Woods as a “star”.

She said: “Ann bought the gym a couple of months ago to stop it from going under because she was so concerned about her members.

“We couldn’t do without her. She organises something every week. She will do anything to help anybody.”