Ataxic Dysarthria Toastmaster speech 18 – Video

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This Ataxic Dysarthria Toastmaster continues to get better!! :-). I have done 18 5-7 minute Toastmaster speeches and this month, taught a six-session 12 hour job search workshop (like I did pre-stroke)! So there! People now say I sound like I have a "swedish" or German Accent (because I over-enunciate), rather than sounding like a "drunk" with slurred words, like a year ago. That's a promotion - better a foreigner than a drunk! And I am understood pretty much everywhere - even on the phone and in noisy places! The attached speech was totally spoken without notes, totally off the cuff

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Ataxic Dysarthria Toastmaster speech 18 - Video

Nighttime leg cramps hurt patient

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Dear Dr. DonohueI have leg cramps at night quite often. They wake me up, and I have to straighten my leg slowly. I do 15 bends, squats, modified push-ups and sit-ups every night. What causes these cramps? What can I do to stop them? I am physically fit and healthy at age 80. R.C.

AnswerNighttime leg cramps are the bane of a significant number of older people. What causes them is a question to which no one has come up with an answer. That hasn't stopped people from suggesting a number of possible causes: low magnesium, low potassium, too little calcium. None of these has been proved.

Some medicines have been implicated as possible causes. Water pills (diuretics) have been cited, as have long-acting beta-2 agonists used for asthma control.

Peripheral artery disease, a common malady of the elderly, is said to be common among people who suffer from nighttime cramps. That's the circulatory problem where there's obstruction to blood flow to the legs because of clogged arteries. The various kinds of arthritis also are said to contribute to nighttime cramping.

Ways to end cramps include doing exercises before going to bed. Leg exercise is particularly important. If you have a stationary bike, it might be one way to conquer cramps. Stretching exercises for the leg muscles also are important. If the calves are cramping, then stand on a stair with your heels projecting off the stair. Lower your heels, and hold that position for 10 seconds. Repeat 10 times at bedtime, and do this exercise three times during the day.

Medicines sometimes can be helpful if nothing else is working. Examples are gabapentin (Neurontin), diltiazem (Cardizem) and a multivitamin containing a mix of B vitamins. Tonic water, because of its quinine content, often is offered as a preventive step.

The booklet on restless leg syndrome and nighttime cramps offers more tips. Readers can obtain a copy by writing: Dr. Donohue No. 306, Box 536475, Orlando, FL 32853-6475. Enclose a check or money order (no cash) for $4.75 with the recipient's printed name and address. Please allow four weeks for delivery.

Dear Dr. DonohueMy husband was diagnosed with ataxia. What is it? R.A.

AnswerAtaxia is uncoordinated muscle movement. For most ataxia patients, it indicates a stumbling walk.

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Nighttime leg cramps hurt patient

ABC News Profiles BalanceWear® and the Benefits for Multiple Sclerosis Patients

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SAN FRANCISCO--(BUSINESS WIRE)--

Wow, Its like looking at a miracle, isnt it, said Cheryl Jennings, co-anchor of ABC 7 News. She was referring to reporter Carolyn Johnsons Health & Science segment on BalanceWear, a semi-custom made orthotic that has helped dramatically improve stability in patients with MS, Parkinsons disease, stroke, TBI, ataxia and other Sensory Based Motor Disorders (SBMD).

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For patients suffering from multiple sclerosis or other degenerative diseases, just controlling their own bodies can be a challenge. But now, a simple device invented in the Bay Area is helping a growing number of those patients move far more smoothly, Johnson says as she introduces viewers to Mary Spencer, a woman who suffers with balance issues caused by Multiple Sclerosis and to physical therapist Cindy Gibson-Horn, creator of BalanceWear.

"You can't tell what direction is what. Your body doesn't know what's up or down," says Mary.

Directional loss is a symptom of several Sensory Based Motor Disorders. As the patient walks, he or she becomes preoccupied with their movements, trying to compensate with every step in order to keep from falling. Gibson-Horn discovered that small, strategically placed weights applied to BalanceWear helps to adjust directional loss. Her research led to the discovery of Balance-Based Torso Weighting (BBTW), a breakthrough that has been noticed by doctors and researchers. Recently, a National Institutes of Health Recovery Grant of just under $400,000 was awarded to Samuel Merritt University (SMU) Physical Therapy Professor Dr. Gail Widener, PT, and Dr. Diane Allen at San Francisco State University to continue research into Balance-Based Torso Weighting (BBTW) and its effects on Multiple Sclerosis (MS) mobility challenges. The first phase of the study validates previous research funded by the National MS Society. The research is currently in its second phase and has led to documented evidence of the efficacy of prior clinical observations.

"If you think about balance, it's the foundation of movement. So you couldn't even sit, unless you had balance," Gibson-Horn tells Johnson. "If the patient has a balance problem, and we can identify the directional losses of balance, then we can treat those imbalances by strategically placing light weights in BalanceWear and immediately you'll know whether or not your patient is going to experience balance improvement."

Steve Cookston, CEO of Motion Therapeutics, the company that manufactures and markets BalanceWear, has spent years in the medical device field. BalanceWear has the remarkable ability to change a persons life by simply being fitted for the vest, says Cookston. It requires no downtime, drugs or special care. It is designed and manufactured to insure that the patients balance is dramatically improved immediately and that is what makes us all enthusiastically committed to this product.

Says Johnson, For Spencer, the results have already been life changing.

"I have the freedom to move without thinking, 'Where do I need to be? How do I need to stand?'" Spencer explains.

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ABC News Profiles BalanceWear® and the Benefits for Multiple Sclerosis Patients

Norwich Free Academy graduates sent off with wisdom

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With her support system by her side, Danielle Ciccotti is fearless.

Life after high school doesnt seem so scary for the new Norwich Free Academy graduate.

Its exciting, Ciccotti, of Preston, said, and the real world doesnt seem that bad, especially since I know Ill always have someone by my side.

Ciccotti and her assistance dog, Rover, both wearing caps and gowns, went through NFAs commencement exercises Friday afternoon.

Ciccotti needs Rover, a golden retriever, to help her with her balance. Ciccotti has ataxia, a lack of muscle coordination that can affect speech, walking and other voluntary movements.

He doesnt love wearing the cap, Ciccotti said. Weve been practicing with the hat so he keeps it on. NFAs class of 2012 was one of the largest in recent years. A total of 549 students earned diplomas.

Im going to miss the community here at NFA, graduate Emma Fontaine, of Norwich, said. She plans to attend the University of Delaware in the fall. We have special bonds with each other and the teachers; everyone here wants you to succeed.

Make it special

Class speaker Brian Reyes encouraged his classmates to continue with the lessons they learned at NFA.

Let us make it our mission to make it special, Reyes told the graduates. To continue the goodwill, the good work and the goodness we learned here at NFA. But let me caution you: We can only be special people if we find it in our hearts to do special deeds for others.

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Norwich Free Academy graduates sent off with wisdom

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Boy will get service dog thanks to fundraiser

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By Mike Hodgson/Associate Editor Email this story Print this story

Lucas Appleton, right, plays with Tony Boy during a fundraiser Sunday at Mangos Saloon in Grover Beach. //Phil Klein/Contributor

A Grover Beach boy stricken with Friedreichs ataxia will get his service dog as a result of a fund-raiser that drew more than 400 people Sunday.

Nine-year-old Lucas Appleton, who suffers from the progressively crippling form of muscular dystrophy, managed to spend five hours at the event at Mongos Saloon, said his godmother, Linda McClure, who organized the barbecue that included a prize drawing, musical performances and a bake sale.

It was a huge success, McClure said. Lucas was so happy and so was his brother (William) and mother, Casandra.

We raised enough to get him a dog, with a small amount left over for a van, and were working on that now, she said.

A trained service dog, which costs $12,000 to $15,000, will help Lucas maintain his balance, turn on lights for him, pick up things hes dropped, help him through the familys narrow bathroom door and just be a companion.

McClure said about 450 people and a host of dogs attended the event that started at 10:30 a.m. and continued until Mongos closed that night.

She noted Lucas had asked to have a golden retriever or black Labrador retriever for a service dog, which might not be possible.

But a golden retriever club heard about his request and showed up with all their dogs.

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Boy will get service dog thanks to fundraiser

Grover Beach boy will get service dog thanks to fundraiser; more that 400 attend event

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By Mike Hodgson/Associate Editor Email a friend Printer friendly

Lucas Appleton, right, plays with Tony Boy during a fundraiser Sunday at Mangos Saloon in Grover Beach. //Phil Klein/Contributor

A Grover Beach boy stricken with Friedreichs ataxia will get his service dog as a result of a fund-raiser that drew more than 400 people Sunday.

Nine-year-old Lucas Appleton, who suffers from the progressively crippling form of muscular dystrophy, managed to spend five hours at the event at Mongos Saloon, said his godmother, Linda McClure, who organized the barbecue that included a prize drawing, musical performances and a bake sale.

It was a huge success, McClure said. Lucas was so happy and so was his brother (William) and mother, Casandra.

We raised enough to get him a dog, with a small amount left over for a van, and were working on that now, she said.

A trained service dog, which costs $12,000 to $15,000, will help Lucas maintain his balance, turn on lights for him, pick up things hes dropped, help him through the familys narrow bathroom door and just be a companion.

McClure said about 450 people and a host of dogs attended the event that started at 10:30 a.m. and continued until Mongos closed that night.

She noted Lucas had asked to have a golden retriever or black Labrador retriever for a service dog, which might not be possible.

But a golden retriever club heard about his request and showed up with all their dogs.

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Grover Beach boy will get service dog thanks to fundraiser; more that 400 attend event

BalanceWear® Creator, Cindy Gibson-Horn, Named Finalist in San Francisco Business Times Health Care Heroes Awards

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SAN FRANCISCO--(BUSINESS WIRE)--

The very nature of a health care professional is already rendered heroic by the community and patients they serve. The San Francisco Business Times wants to make sure the true heroes in the health care profession dont go unnoticed by publishing their annual list of finalists for their Health Care Heroes Awards. This year, physical therapist, Cindy Gibson-Horn, creator of BalanceWear, has been named to the list. Gibson-Horns discovery nearly a decade ago of Balance-Based Torso-Weighting (BBTW) led to the creation of BalanceWear, a semi-custom made orthotic that has helped dramatically improve stability in patients with MS, Parkinsons disease, stroke, TBI, ataxia and other Sensory Based Motor Disorders (SBMD).

Steve Cookston, CEO of Motion Therapeutics, the company that manufactures and markets BalanceWear, has worked with Gibson-Horn the past several years to bring the BalanceWear product line to fruition and credits Gibson-Horns passion for her patients well-being as a major reason for the products success.

Cindy is committed to giving her patients freedom, says Cookston. Balance and mobility are keys to independence as well as being vital to rehabilitation. Having worked with many medical devices and products, BalanceWear is the most inspiring, often taking a patient from being dependent on others to complete liberation.

If someone had told me they were going all the way to California from the east coast to see if a vest would help with balance, I probably would have told them they were crazy. But I saw and now I believe! BalanceWear has been a miracle for my mother and our family. Even though she will be 79 on June 25, we have our mother back the way she wants to be and the way we want her to be, said Kevin Eck.

I have MS and have used the BalanceWear vest for the last four months. It has made a tremendous difference in my life as I can now walk without my cane. I am walking more than I had using my cane and so am increasing strength and decreasing my possibility for Osteoporosis. I am going places I havent in a long time and my mood has improved, said Lisa Cohen.

I have used BalanceWear on at least ten individuals with ages ranging from 2 years old to 32 years old. I find that there are immediate positive changes in my patients ability to improve static and dynamic balance, improve functional mobility, such as walking up and down stairs without holding onto the railing; the ability to take independent steps without use of an assistive device or help; the ability to run in a straight line with reciprocal arm swing; and the ability to go from sit to stand without losing their balance, said Elaine Westlake, MA, PT.

Physical Therapist, Cynthia Gibson-Horn, discovered that strategically placed small amounts of weight could counter-balance directional losses and dramatically improve stability in patients with MS, Parkinsons disease, stroke, TBI, ataxia and other Sensory Based Motor Disorders (SBMD) during clinical applications. This discovery led to the development of the patented BBTW method and BalanceWear, which has now helped hundreds of patients.

Recently, a National Institutes of Health Recovery Grant of just under $400,000 was awarded to Samuel Merritt University (SMU) Physical Therapy Professor Dr. Gail Widener, PT, and Dr. Diane Allen at San Francisco State University to continue research into Balance-Based Torso Weighting (BBTW) and its effects on Multiple Sclerosis (MS) mobility challenges. The first phase of the study validates previous research funded by the National MS Society. The research is currently in its second phase and has led to documented evidence of the efficacy of prior clinical observations.

The San Francisco Business Times award brings attention to the health care profession and the numerous advances for patients that are suffering with debilitating illnesses, says Gibson-Horn. I am so honored to be among the finalists, but I see heroes in my patients who wake up every day with balance and walking challenges that I can only witness. Perhaps it sounds clich, but this honor is shared between me and my patients. Were in the healing process together.

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BalanceWear® Creator, Cindy Gibson-Horn, Named Finalist in San Francisco Business Times Health Care Heroes Awards

Four Children of Retired Policeman Paralyzed

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(VIVAnews/Robbi)

VIVAnews Four out of five children of a retired police officer First Sub-Lieutenant (Ret.) Sahirun and Warsini are paralyzed. It all began in 2005 when the father who had no money was forced to take his family to an old pig den.

Suddenly, his children become paralyzed, one by one. They are Musiaroh (36), Amin Muntoha (35), Musinah (27), and Riyatin (25). Meanwhile Kiswanto (30) who lived with other people was not affected.

Based on previous medical examination, the disability was caused by a genetic disorder.

A neurosurgeon of Margono Sukaryo Hospital in Purwokerto, dr Untung Gunarso, said the four people had been admitted to the hospital.

Based on the diagnosis, they suffer from muscle atrophy, he told VIVAnews, on Thursday.

The four siblings were then taken to Kariadi Hospital in Semarang. They even had their blood samples sent to Europe to be studied in a laboratory. It is concluded that the four siblings have a genetic disorder or Friedreich's ataxia syndrome.

This type of illness usually attacks 15-year-old adolescents, and may worsen when the patient reaches the age of 22.

So, in relation with the allegation of a virus attack caused by their former residence with their parents in an old pig den, its still uncertain yet, he said.

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Four Children of Retired Policeman Paralyzed

The Classic notebook: Veteran runner Baker still cooking at 50

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Frank Shorter, left, autographs White Plains runner Alicia Sokolofsky's bib on Sunday.JEFF GOULDING/Times Herald-Record

Published: 2:00 AM - 06/04/12

MIDDLETOWN Brian Baker doesn't seem to age, from his youthful appearance to his spectacularly consistent road running times.

Baker, of Walden, turned 50 this year, but continues to clock times that would make a 20-year-old proud. He won the 50- to 54-year-old age group in 39:54 on Sunday at The Classic 10K.

Baker is within only 90 seconds or so of times he ran as a 19-year-old. He has missed only four of the 32 Classics (2006-present) and Orange Classics (1981-2005).

"I'm psyched that I'm maintaining that consistency,'' he said.

A vegetarian most of his life, Baker chalks up his remarkable consistency to "good genes and a healthy lifestyle.'' He's also durable, having run for 36 years without being slowed by any chronic injuries. Baker finished his 37th marathon at Boston in April.

Liberty High graduate Mike Belfiore raised more than $5,000 on Sunday for Juvenile Diabetes, honoring a friend's daughter recently diagnosed with the disease at 18 months old.

"It broke my heart to see them go through what they went through,'' said Belfiore, a father of children ages 5 and 1. He said his friend's daughter is doing well. Belfiore set a goal of $5,000 and had raised about $5,400 through Sunday. Donations to the cause in Belfiore's name can be made at jdrf.org.

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The Classic notebook: Veteran runner Baker still cooking at 50

PRICETON: Steve Carell addresses class of 2012

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Despite pouring rain Monday morning, throngs of Princeton University graduates gathered on Cannon Green for their Class Day ceremonies, where a local teen was made an honorary class member and actor Steve Carell addressed the students.

Derek DiGregorio, 14, of Princeton, received the loud cheers as he was inducted as an honorary member of the class.

Derek has touched the hearts of many throughout the Princeton community and the Class of 2012, said John Monagle, class treasurer, as he introduced the boy during the ceremony. Hes had a deep impact on many of our classmates Princeton experiences.

Derek, an eighth grader at John Witherspoon Middle School, was born 14 years ago with a disease called ataxia telagiectasia (A-T) that will eventually rob him of movement, compromise his immune system and may cause cancer.

Derek has worked to raise awareness of A-T and to support families who are also facing the disease, said Mr. Monagle, who noted to loud cheers, that the boy is a five-time world champion in tae kwon do and a gold medalist in bowling at the New Jersey Special Olympics. Dereks story is one of courage, passion and determination. He lives the values Princetonians hope to embody and Im honored to present Derek as an honorary class member of the Class of 2012.

According to Derek, the honor was awesome, and he plans to wear his class jacket to school on June 5.

It felt really, really good and it was very special to be a part of something like that, said Derek after returning home from the ceremony and lunch party on campus.

Dereks father, Steve DiGregorio, is a former Princeton University football coach from 1987 to 1999 who left the team to spend more time with his son.

I dont have words; this is so overwhelming for all of us, said Mr. DiGregorio. We got word two and a half, three weeks ago that this was going on, and we are so overwhelmed. My wife and I are very grateful for all of this and very grateful to the senior class for doing this for Derek and making it such a special day for our family.

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PRICETON: Steve Carell addresses class of 2012

A boy’s struggle with Freidreich’s ataxia

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By Jennifer Best/Contributing Writer Email this story Print this story

Lucas Appleton, 9, is struggling with the challenges of Freidreichs ataxia. A fundraising barbecue and dance concert will be held Sunday. //Phil Klein/Contributor

By anyones account, Lucas Appleton of Grover Beach is a spunky, active, 9-year-old boy. He revels in building with Lego bricks, playing with big brother William and watching SpongeBob.

Hes a charmer, thats for sure, said his mother, Casandra Appleton.

In the years to come, hell need all the spunk and charm he can muster as he struggles with the challenges of Freidreichs ataxia, or FA, a rare, crippling form of muscular dystrophy thats robbing Lucas of his mobility. Approximately 13,000 individuals have been diagnosed with FA in the United States, according to the Muscular Dystrophy Association.

Hes gone from being a very active, agile little kid to one who stumbled often to using a walker most of the time, or a wheelchair for long days, said Linda McClure, his godmother.

While there is no cure for the disease, friends and family members believe there are services that could help Lucas preserve his independence, and theyre willing to put themselves out there to help raise funds for him.

McClure, owner of American Property Services, in conjunction with Mongos Restaurant and Sports Bar, 359 W. Grand Ave., Grover Beach, will hold a fundraising barbecue and dance concert from 10:30 a.m. until closing Sunday.

Big brother William Appleton will sing Amazing Grace, Anthony Salas and his band, Naughty Ruby, will perform, and Mongos will provide the DJ service and the band Smokin Gunz for late afternoon and evening entertainment. More bands are encouraged to donate their services to this event as well.

There is no cover charge for the event. Instead, funds raised from the sale of food, alcohol and raffle tickets will benefit Lucas. Only 200 tickets, at $100 each, will be sold. Prizes include a flat-screen TV, massages, a beer keg refrigerator and, for the last ticket drawn, $5,000 in cash.

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A boy’s struggle with Freidreich’s ataxia

Evie Read is an active five-year-old – but ataxia-telangiectasia will rob her of ability to speak and walk while …

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Twenty children in the UK are diagnosed with ataxia-telangiectasia every year Progressive condition will slowly rob Evie of her physical abilities. There is no known cure

By Claire Bates

Last updated at 7:50 AM on 29th February 2012

If you saw Evie playing with a group of her school friends, the only difference you might notice is that she is sometimes a little unsteady on her feet.

Tragically her 'wobbly legs' are due to a devastating underlying condition, that will slowly rob the bright blonde girl of her physical abilities while leaving her mentally alert.

The rare disorder known as ataxia-telangiectasia - A-T for short - is a progressive neurodegenerative disease that affects around 20 children in the UK each year. Most youngsters with the condition are wheelchair-bound by the age of 10 and few survive past their 18th birthdays.

Big sister: Evie, 5, (pictured left with her brother Wilf, 3) has a condition that causes progressive disability and premature death. Her parents are campaigning for better awareness of the disease

Evie's father Toby Read, 37, said the day he and his wife Emily had received the diagnosis in September 2011 was the worst of their lives.

'We had read enough to know that it was incurable and that it would do terrible, terrible things to our daughter,' he said.

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Evie Read is an active five-year-old - but ataxia-telangiectasia will rob her of ability to speak and walk while ...