AbledIssues-Organ-Transplants-Should-Persons-With-A-Disability-Be-Denied

POSTED ON December 13th  - POSTED IN AbledIssues
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A ‘hot-button’ topic with suspicions about favoritism for the wealthy and Insurance company discrimination against the poor and disabled

 

CNN’s Senior Medical Correspondent, Elizabeth Cohen, has done a lengthy report about a disabled baby being denied a heart transplant as part of The Empowered Patient series.

 

In this case, Maverick Higgs was born with a heart defect, and was in heart failure even after two surgeries. Doctors discussed the question of a heart transplant, but told the parents, Autumn Chenkus and Charlie Higgs that Maverick didn’t quality for a transplant because of a rare genetic defect called Coffin-Siris syndrome, which they claimed put him at a high risk for tumors and infections.

 

AbledIssues-a family photo shows  Charlie Higgs and Autumn Chenkus lying on a pillow flanking their infant son Maverick.

 

After doing extensive research. including talking to a co-author of one of many studies on the condition, Autumn Chenkus found that not one of the studies cited any risks for tumors and infections. Yet, even this discovery was not enough to bring the doctors onside and it was then she felt the doctors were discriminating because children with Maverick’s condition grow up to have disabilities.

 

 

Being stewards for scarce organ donations or perpetuating misinformed bias?

 

At the moment in the United States, some 3,500 people are on waiting lists for a heart transplant. Last year, 321 people, including 19 infants died waiting. Demand is increasing, while the supply of donor organs remains relatively static.

 

This growing scarcity of a precious medical commodity is forcing more doctors to choose for patients with the best chances of living a longer life and enjoying a higher quality of life from a transplant.

 

Over the years, medical ethicists and patient advocates have accused transplant physicians of discriminating against one group in particular: the disabled.

 

Elizabeth Cohen’s report points out two cases in which public outcries reversed doctors’ decisions to withhold transplants from disabled individuals. One case, in 1995, involved a patient named Sandra Jensen who received a note from a doctor saying, ‘We do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantations’. After a newspaper published the note, the public outcry led to Jensen getting a new heart. She died 16 months after her heart-lung operation from one of the 32 types of cancer associated with transplantation.

 

The other case, last year, involved – then, three year-old – Amelia Rivera, a New Jersey girl who was denied a kidney transplant because she has the genetic disorder Wolf-Hirschhorn syndrome which delays growth, development and intellectual abilities and, depending on the type, has a median life-expectancy of 34 years.

 

Amelia’s mother blogged about the denial, it went viral and resulted in an online petition that forced the Children’s Hospital of Philadelphia to reverse its decision.

 

These cases have touched-off a firestorm of debate about who should be eligible for such transplants, giving the scarcity of donated organs. Indignant posters to various comment threads cite discrimination and a double-standard for celebrities and the rich, using singer/musician David Crosby , television’s JR. Ewing – actor Larry Hagman – and baseball legend Mickey Mantle as examples of money and fame buying notorious alcoholics a liver transplant.

 

What do you think? Read Elizabeth Cohen’s full report at CNN and then add your voice in our facebook comments section below.

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AbledNews-H7N9-Bird-Flu-Mutation-Makes-It-Resistant-To-First-Line-Treatment

POSTED ON December 11th  - POSTED IN AbledNews
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Researchers recommend doctors avoid using common first-line drugs like Tamiflu which could help build resistance 

 

In April of this year, researchers in China discovered the first examples that the Influenza A (H7N9) ‘bird flu’ virus had the ability to mutate and develop resistance to oseltamivir, more commonly know as Tamiflu.

 

Now a separate team of researchers at the Mount Sinai School of Medicine in New York has confirmed it and published their results in the journal Nature Communications.

 

Nicole Bouvier, who led the team, emphasized there is no cause for alarm . . . yet, saying, “these H7N9 viruses seem to transmit fairly inefficiently overall”.

 

Photo shows greyscale photo of the H7N9 strain of the Influenza A virus as seen under an electron microscope taken at the U.S. Centers For Disease Control, showing the filaments and spheres of the virus that look like a string of pearls.

 Photo of the H7N9 strain of Influenza A as seen under an electron microscope. Source: CDC

 

For their study, Bouvier’s team worked with a mutated version of the H7N9 virus which was sampled from an infected patient in China to assess its resistance to drugs and how infectious it was before and after treatment.

 

They found it highly resistant to Tamiflu, and that it was still infectious. In fact, it infected  human cells in a laboratory dish, and spread between laboratory animals just as efficiently as a non-mutated virus.

 

“This is unusual, as it is known that when seasonal influenza viruses gain resistance to drugs, it usually happens at a cost to the virus – the cost being a reduced ability to transmit between hosts and to grow within them,” they wrote.

 

The researchers make a point of saying that while this doesn’t make it any more likely that H7N9 will develop into a global human pandemic, it does mean doctors should be cautious with their use of anti-viral medicines to treat H7N9 cases, and should evaluate using drugs other than Tamiflu, such as GlaxoSmithKline‘s Relenza.

 

A different team of researchers in the United States counters that it’s not impossible that H7N9 could eventually become easily transmissible between humans, but it would have to undergo multiple mutations first.

 

Nevertheless, scientists around the world are on alert for any signs that the virus is developing that ability.

 

You can follow our ongoing coverage of the spread of the H7N9 virus here.

 

The Latest H7N9 Stats To Date:

 

A map of Asia from the World Health Organization shows the locations of confirmed cases of H7N9 infection as of the 25th of October, 2013. The map also details the progression of cases from the beginning of the year with 4 cases and 3 deaths in february; 33 cases and 18 deaths in March; 94 cases and 23 deaths in April; 2 cases in May; no cases or deaths in June; 2 cases and 1 death in July; no cases or deaths in August or September; 2 cases in October for a total to date of 137 cases and 45 deaths.

 

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POSTED ON December 2nd  - POSTED IN AbledSeniors
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When it comes to the benefits of exercise –  it’s never too late

 

A new study in the British Journal of Sports Medicine  reinforces the saying ‘use it or lose it’ when it comes to exercise, especially for seniors.

 

The English Longitudinal Study of Aging tracked 3,500 indviduals who were an average age of 64 for at least eight years and found that those who were able to work out regularly at moderate or vigorous levels at least once a week were three to four times more likely to remain healthy while aging compared to those who didn’t exercise.

 

The take-home message really is to keep moving when you are elderly,” lead investigator Dr. Mark Hamer, from the Epidemiology & Public Health at the University College London, told the BBC. “It’s [a] cliche, but it’s a case of use it or lose it. You do lose the benefits if you don’t remain active.”

 

Ten percent of the group became active sometime during the study, and 70 percent remained active throughout the study. The rest were either inactive or became inactive.

 

About 40 percent had developed a long-term health condition, 20 percent were depressed, one-third had some form of disability, and 20 percent experienced cognitive impairment.

 

However, 20 percent remained healthy agers.

 

 

Read more @ CBSNews.com

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POSTED ON November 24th  - POSTED IN AbledHealth
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AbledHealth post banner shows a selection of mixed nuts on a glass background with the headline: Longevity-Eating nuts may prolong life | Walnuts are the healthiest.

Study also sees 29% reduction in heart disease

 

It’s the largest study of its kind that followed close to 120,000 people over 30 years which not only saw reductions in the death rates of participants, but also reduced risks of deaths from heart disease and cancer.

 

The study is published in the New England Journal of Medicine and found that the biggest benefit was seen from eating a daily portion of nuts. Eating nuts has been associated with a decreased risk of developing a number of major diseases, including heart disease and diabetes, but there had never been a study examining the association between nut consumption and mortality.

 

What likely has an impact on the study is that the participants consisted of  76,464 women in the Nurses’ Health Study (1980–2010) and 42,498 men in the Health Professionals Follow-up Study (1986–2010). Participants with a history of cancer, heart disease, or stroke were excluded.

 

The research team said nut eaters were also likely to have healthy lifestyles, including being less likely to smoke or be overweight and more likely to exercise, but they say the nuts themselves were also contributing to the longer lifespans.

 

Among the results:

 

Eat nuts 1x a week = 11% reduction in death rate

Eat nuts 4x a week = 13% reduction in death rate

Eat nuts 7x a week = 20% reduction in death rate

 

Lead researcher Dr Charles Fuchs, from the Dana-Farber Cancer Institute and Brigham and Women’s Hospital, said: “The most obvious benefit was a reduction of 29% in deaths from heart disease, but we also saw a significant reduction – 11% – in the risk of dying from cancer.”

 

Funding for the study came from the US National Institutes of Health and the International Tree Nut Council Nutrition Research & Education Foundation (nuthealth.org).

 

 

Nut consumption and risk of pancreatic cancer in women

 

Increasing nut intake has also been associated with reduced risk of diabetes mellitus, which is a risk factor for pancreatic cancer. After adjusting for age, height, smoking, physical activity, and total energy intake from the same study group, NutHealth.org found that women who consumed a 28-g (1 oz) serving size of nuts up to 2 times per week experienced a significantly lower risk of pancreatic cancer (RR, 0.65; 95% CI, 0.47–0.92; for trend=0.007) when compared with those who largely abstained from nuts. 

 

 

Walnuts Are The Healthiest Nut

 

Photo shows whole and half-shelled walnuts on a white counter top.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Earlier this year, researchers at the University of Scranton, Pennsylvania told the American Chemical Society that walnuts contain the highest level of antioxidants compared to other nuts and should be eaten more as part of a healthy diet.

 

Dr. Joe Vinson analyzed the antioxidant levels of nine different types of nuts and found that the antioxidants found in walnuts were 2 to 15 times as powerful as vitamin E and 2 times more powerful than any of the other nuts in the sample.

 

He mentions the walnuts should be eaten raw or unroasted to get the full benefit as the heat from roasting nuts reduces the quality of the antioxidants.

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POSTED ON October 15th  - POSTED IN AbledIssues
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SPECIAL REPORT: THE UNITED STATES GOVERNMENT SHUTDOWN
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Tracking the impact of the shutdown on those who are most in need

UPDATE (Oct.16): IT’S OVER! GOVERNMENT SHUTDOWN ENDS AFTER 16 DAYS

After a little over two weeks of a back-and-firth game of political ‘chicken’, U.S. President Barrack Obama moved quickly to sign an 11th hour deal passed by Congress to end the partial government shutdown and rescue the world’s largest economy from the brink of an unprecedented debt default.

The House of representatives voted 285-144 to end the stalemate after the Senate voted 81-18 to end the political standoff. President Obama signed the bill into law just just a half-hour after midnight eastern time. Federal workers returned to work later that same Thursday.

 

 

On CBS’ ‘Face The Nation‘, host Bob Schieffer says it’s not just federal workers who have been hurt by the political games in Washington:

 

 

Two weeks into the U.S. Federal Government shutdown, the political stalemate continues, and as more time goes by, more services risk being reduced or halted altogether.

It’s been particularly tough on communities and people reliant on tourism because of the closure of national parks, although the federal government is now giving state governments the option of using their own funds to cover park operations.

Let’s take you through the categories that affect our general health and welfare and give you a status report on whether they are being impacted:

 

Food Safety

Both the Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention (CDC) have furloughed much of their staff, but claim they can handle recalls and food-borne outbreaks that are high risk.

However, the CDC had to re-call many of those employees to deal with the salmonella outbreak in raw chicken that has sickened as many as 317 people in 20 states and Puerto Rico and put 42% of them in the hospital.

Read more in our AbledALERTTM ongoing coverage of the outbreak.

 

In this photo from NPR/AP, Former Agriculture Secretary Ed Schafer dressed in white sanitation overalls, hairnet, glovers and safety glasses with a coral red helmet,  follows the work of USDA inspectors at a Cargill meat packing plant in Schuyler, Nebraska in 2008.

 

The U.S. Department of Agriculture (USDA) is required, by law, to have meat inspectors on the processing lines in meatpacking plants every day in order for the plants to remain open – and, so far, those inspections are proceeding as usual.

 

Health

Medical research at the National Institutes of Health (NIH) has been affected, delaying some studies. Usually, about 200 new patients enroll every week in studies at the NIH research hospital, but because of the government shutdown, that has been halted. They have made an exception to allow 12 patients with immediate life-threatening illnesses into clinical trials.

The CDC’s tracking ability for disease outbreaks, such as the flu or the MERS virus from the Middle East has been severely limited.

 

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The FDA has halted the evaluation and approval process for pharmaceutical drugs and medical products.

 

Military

If the government shutdown drags-on into November, $6 billion worth of checks won’t go out, and that will be a double-blow to the 33% of Veteran’s Affairs employees who are veterans themselves.

 

A photo shows the Department of Veterans' Affairs Hospital in Palo Alto, California with a curved caramel brick and glass facade set into the middle of diagonal rectangular lighter sandstone colored wings.

 

Inpatient and outpatient care at hospitals and Vet centers is still being provided because the Congressional funding for it is approved a year in advance. But efforts to reduce the backlog in disability claims have stalled because overtime for claims processors has been cut-off, and compensation and pension payments will be halted if the shutdown rolls into late October.

When the government shutdown began, it halted the authority of the Defense Department to pay the typical $100 thousand death gratuities to the survivors of fallen U.S. Armed Forces members killed in action. That cash payment is usually made within three days of the service member’s passing. 

The Defense Department had a Plan B in the form of contracting with the Fisher House Foundation, which supports military families, to provide the $100 thousand payments for the duration of the government shutdown, pending repayment. But a few days later, President  Barack Obama signed legislation that Congress had passed to resume the payments, while the politicians were left fighting among themselves over who to blame for the interruption of the payments.

 

Social Benefits

Medicare and Social Security benefits are being paid out. Unemployment benefits continue to be paid. However, there could be delays in processing new disability applications.

The biggest immediate area of concern is for nine million moms and babies at risk because the $7 billion dollar Special Supplemental Nutrition program for Women, Infants and Children – known simply as ‘WIC’ – was expected to run out of money. Some states have stopped accepting new participants.

 

A screen grab from the USDA's website shows information about the WIC program at a glance. Click on the photo to go to the USDA website.

 

UPDATE:

The the USDA has announced it is reallocating funding to cover WIC costs for the remainder of the month. WIC provides formula and breastfeeding support, as well as nutrition education for mothers and children across the country in co-ordination with state Departments of Health.

 

Graphic design shows the logo of the Supplemental Nutrition Assistance Program (SNAP) which features a green bag full of groceries, such as a milk carton, egg carton, bread,fruit and vegetables in solid colors in stencil form next to the words that make up the acronym SNAP.

On the morning of Saturday, October 12th, recipients of federal food stamps in several states, officially known as the Supplemental Nutrition Assistance Program (SNAP), and some WIC recipients were blocked from being able to use their payment cards and tokens when a computer failure caused a system shutdown in the network provided by subcontractor Xerox.

A Xerox representative said the glitch, which occurred during a test of back-up systems, was fixed by Saturday night.

 

 

 

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POSTED ON September 9th  - POSTED IN AbledConditions
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AbledConditions story headline shows a soft-lit photo of Linda Ronstadt with the headline: Parkinson's Disease: Linda Ronstadt - A legendary voice sings no more

 

Singer reveals a years-long battle with tick disease and Parkinson’s Disease

UPDATE: September 13: Linda Ronstadt – ABC World News Tonight Person of the Week

In an exclusive interview with ABC World News Tonight anchor Diane Sawyer, Linda Ronstadt reveals that she suspected she might have Parkinson’s Disease for the last 12 years. 

In her interview with AARP, Ronstadt said she had suffered from Lyme Disease after she was bitten by a tick that she got from one of her cows. Other persons with Parkinson’s, such as Michael J. Fox, have also reported suffering from Lyme Disease after a tick bite and going on to develop Parkinson’s Disease.

Ronstadt explains the effects Parkinson’s has had on her singing voice and why it’s now left her unable to sing in public. She displays her characteristic humor and a courage few people knew she possessed.

 

 

Linda Ronstadt has been one of the most distinctive voices in popular music, from her time fronting the Stone Ponys in the Sixties, through her solo successes in the following decades, including the phenomenal Trio albums with Dolly Parton and Emmylou Harris.

But now that voice has been silenced, at least when it comes to singing, because she has now revealed to the world that she has been diagnosed with Parkinson’s Disease. 

 

Photo of the cover of Linda Ronstadt's new autobiography 'Simple Dreams' published by Simon and Schuster and Free Press. Click here to buy the book at Amazon.com.The revelation isn’t contained in Ronstadt’s new autobiography Simple Dreams , (published by SImon and Schuster and Free Press), because the official diagnosis wasn’t confirmed until months after the final submissions for the book. You can click on the book’s cover photo to purchase it at Amazon.com.

 

From Wikipedia: ‘Parkinson’s Disease is a degenerative disorder of the central nervous system. The motor symptoms of Parkinson’s disease result from the death of dopamine-generating cells in the substantia nigra, a region of the midbrain; the cause of this cell death is unknown. Early in the course of the disease, the most obvious symptoms are movement-related; these include shakingrigidityslowness of movement and difficulty with walking and gait. Later, thinking and behavioral problems may arise, with dementia commonly occurring in the advanced stages of the disease, whereas depression is the most common psychiatric symptom. Other symptoms include sensory, sleep and emotional problems. Parkinson’s disease is more common in older people, with most cases occurring after age 50.

 

A montage of photos from Google Search shows the covers of some of Linda Ronstadt's albums.

A montage of some of Linda Ronstadt’s album covers from Google Search.

 

The AARP Interview with Linda Ronstadt

In a wide-ranging interview with AARP (American Association of Retired Persons) in advance of the coming release of her autobiography Simple Dreams, the notoriously private Ronstadt lifts the veil on her growing health challenges. And, despite the heartbreaking end to her singing career, she manages to face it with her characteristic sense of humor:

‘Though her book mentions that her voice began to change at age 50, Ronstadt, now 67, had never offered a solid explanation for her 2009 retirement (the book does cryptically mention a time when she had a “still-healthy voice”).

Ronstadt opens up about the life-altering news she did not put in her new book — she has Parkinson’s disease — and its tragic side effect: “I can’t sing a note.”

The winner of 11 Grammys during a 40-year career that produced more than 30 albums, Ronstadt recorded her final CD (Adieu, False Heart, with Cajun musician Ann Savoy) in 2006. Three years later — on Nov. 7, 2009 — she gave what she calls her last concert at the Brady Memorial Auditorium in San Antonio.

After that, Ronstadt simply declined all invitations to do more.

In late 2012, when a friend asked her to sing on a tribute album to Jackson Browne, a close friend from her L.A. days, she wrote in an email: “I have a serious case of being 66 years old and am completely retired from singing. Of course, one is always pleased to be asked, so tell them I said thank you.”

What old friends and fans did not know is that for the past seven or eight years, Ronstadt had suffered from symptoms that suggested Parkinson’s disease. Eight months ago, a medical diagnosis confirmed it. Never one to shy from a challenge, Ronstadt faces her disease with the determination to push for more and better treatments, both for herself and for other Parkinson’s patients. (For more about Parkinson’s disease, see the box on page 4.)

In the exchange that follows, Ronstadt assesses her career and explains how her Parkinson’s was detected.

Q: You wrote your “musical memoir,” Simple Dreams, entirely yourself. Was that difficult for you?

A: Well, I’d never written anything longer than a thank-you note before. I never kept a diary or a journal. But I’m a reader, and I can put a coherent sentence together, so I thought I could make it honest and clear.

Q: You talk in the book about your love for animals and your pet, Luna the cow.

A: Oh, Luna! Yeah, I loved her — she was such a nice old girl — but I got a tick from her, and that’s probably why I’m sick.

Q: You mean you have a tick disease now?

A: Well, I had two very bad tick bites in the ’80s, and my health has never recovered since then.

Q: Is that why we don’t see so much of you?

A: I can’t sing. I have Parkinson’s disease, which may be a result of that tick bite. They’re saying now they think there’s a relationship between tick bites and Parkinson’s disease — that a virus can switch on a gene, or cause neurodegeneration. So I can’t sing at all.

In fact I couldn’t sing for the last five or six years I appeared on stage, but I kept trying. I kept thinking, “What if I tried singing upside down? Or standing on my head? Or while juggling? [Laughs] Maybe I’d be able to sing better then.”

So I didn’t know why I couldn’t sing — all I knew was that it was muscular, or mechanical. Then, when I was diagnosed with Parkinson’s, I was finally given the reason. I now understand that no one can sing with Parkinson’s disease. No matter how hard you try. And in my case, I can’t sing a note.

Q: When were you diagnosed with Parkinson’s?

A: About eight months ago — just when I was writing the acknowledgments for the book, actually. I got the initial diagnosis, but they didn’t confirm it until six months later. I didn’t want to write about it in the book, because I wasn’t sure.

Q: You noticed the symptoms in your voice before anything else?

A: Yes, but it didn’t occur to me to go to a neurologist. I think I’ve had it for seven or eight years already, because I’ve had the symptoms that long. Then I had a shoulder operation, so I thought that must be why my hands were shaking. Parkinson’s is very hard to diagnose. So when I finally went to a neurologist and he said, “Oh, you have Parkinson’s disease,” I was completely shocked. I was totally surprised. I wouldn’t have suspected that in a million, billion years.’

Read the rest of the AARP interview with Linda Ronstadt

 

A photo shows Linda Ronstadt sitting on a bench in a changing room chatting with Linda McCartney while Paul McCartney plays a guitar riff for Peter Asher, Ronstadt's producer and former member of the 60's singing duo Peter and Gordon during the 1976 Wings Over America Tour.

Linda Ronstadt chats with Linda McCartney while Paul McCartney plays a guitar riff for Ronstadt’s producer Peter Asher in the backstage changing room during the 1976 Wings Over America tour. Asher was formerly one-half of the 60’s singing duo Peter and Gordon for whom McCartney wrote the song ‘World Without Love’.

 

In addition to her interview with Diane Sawyer, Linda also sat down with Robin Roberts on ABC’s Good Morning America to talk about her memoir Simple Dreams and her diagnosis with Parkinson’s Disease:

 

 

Could voice therapy help Linda Ronstadt to sing again?

The Internet has been all abuzz about Ronstadt’s interview and many people in the field of Parkinson’s treatment and therapy have expressed sadness at her declaration that she can’t sing anymore. Many have wondered if she has tried vocal or singing therapy.

Linda Ronstadt only hints at problems with the ‘mechanics’ and the muscles involved with singing, and for someone who has been blessed with one of the most naturally beautiful voices in contemporary music, it’s got to be incredibly frustrating for her. Not to mention her demands on pitch, tone, vibrato and other technical elements of singing would be incredibly high, given her professional pedigree. So her assertion that she can no longer ‘sing a note’ may well be true.

Marsha Kogut, MS, CCC-SLP, a speech pathologist at New York Institute of Technology’s Adele Smithers Parkinson’s Disease Treatment Center says most individuals with Parkinson’s disease exhibit symptoms of soft volume, hoarse and breathy vocal quality, monotone, imprecise articulation (perceived as mumbling) and other problems modifying their speech rates.

She says says individuals with Parkinson’s disease often find relief and success with certain intensive voice therapies.

Although Kogut is not familiar with the specifics of Ronstadt’s case and cannot speak directly on Ronstadt’s condition, she regularly treats individuals with Parkinson’s disease and has had favorable results, particularly with the use of the Lee Silverman Voice Treatment program, an exercise-based behavioral program with a focus on the speech motor system. Kogut and her colleagues work with patients at the center, part of NYIT’s College of Osteopathic Medicine. The center’s guiding concept is to provide comprehensive care to help people improve and maintain quality of life while living with Parkinson’s disease.

LSVT trains individuals to target loudness as a way to trigger improvement of all systems and generalize them to daily communication.”

As part of the therapy process, Kogut often uses singing exercises to enhance the vocal and respiratory mechanisms. She says these exercises can be therapeutic and are a fun way to enhance a tedious therapy session.

Ronstadt says she was diagnosed with Parkinson’s disease eight months ago but began to show symptoms eight years ago.

“The most important thing is to consult with a neurologist who specializes in movement disorders who will tailor the appropriate medications and strongly encourage the initiation of the rehabilitation process,” says Kogut. “Almost anyone can benefit from this program. Although there are some prognostic variables that may indicate that certain individuals may have better outcomes, speech therapy is an essential part of improving the communication process for Parkinson’s patients.”

Adds Kogut: “Individuals with impaired cognitive abilities can benefit from this program, which encourages patients to talk loudly. As a result of reduced amounts of the neuro transmitter dopamine in the brain, Parkinson’s patients have reduced movements in all parts of their body.

LSVT trains the individual’s brain to use the command “talk loud” and the vocal system will respond. Individuals with PD lose the automatic ability to talk loud – they have to command their body to do that. The individual learns to implement the talk loud command, use increased conscious effort, and take deep breaths, which results in family and friends being able to understand them once again.”

Kogut is a practising speech language pathologist since 1975, with expertise in working with the adult neurologically impaired population.

Source: NYIT Newsroom

 

AARP: Linda Ronstadt: New Parkinson’s Therapies May Help You To Sing

Even the AARP’s Blog contains opinions from others on whether voice and singing therapy might benefit Linda Ronstadt:

 

An excerpt from the AARP blog discusses whether new Parkinson's therapies could help Linda Ronstadt to sing again and includes a photo of the members of the Parkinson Voice Project in Dallas in performace while the accompanying text reads, “No one can sing with Parkinson’s disease. No matter how hard you try,” lamented legendary singer Linda Ronstadt, who was recently diagnosed with the condition. That may be true for Ronstadt, but speech pathologists and other Parkinson’s experts say there is enormous hope for most people.  “It made me very sad to hear her say that,” says Samantha Elandary, founder and CEO of the nonprofit therapy group Parkinson Voice Project in Dallas, which has helped patients to sing. “Twenty years ago, speech therapy didn’t work for Parkinson’s patients. But now we know that voice treatment does work, but it has to be a specific kind.”  Whether it could help someone of Ronstadt’s stature regain her full singing range is unclear, but vocal therapy “is very effective,” says neurologist Zoltan Mari, M.D., interim director of the Parkinson’s Disease and Movement Disorders Center at Johns Hopkins University medical school in Baltimore.

 

Read the rest of the article at the AARP’s Blog

On NBC’s ‘The Today Show’, NBC News Chief Medical Editor, Dr. Nancy Snyderman, provided additional insight into Linda Ronstadt’s proclamation that she can no longer ‘sing a note’: “People forget that vocal chords are muscles, so if Parkinson’s causes stiffness and slowing down of the muscles, there is no reason to think your voice wouldn’t be affected too. “If you have to rely on the fine muscle quivering of a vocal chord, that means that a singer can’t do what he or she wants to do.”

Linda Ronstadt joins Muhammad Ali and Michael J. Fox, among celebrities also battling Parkinson’s.

Fox turned out to be 1 of 4 cast members of a Canadian sitcom diagnosed with Parkinson’s under the age of 40, prompting investigations into the cause of the cluster. More recently, the bio of the sitcom’s Director, Don Williams, claims, ‘Current evidence suggests that as many as eight crew and cast members on the project have developed Parkinson’s symptoms’, leading many to speculate about an environmental trigger such as pesticides or previous toxic landfill material possibly being in the ground beneath the studios.

Also, in a previous appearance on David Letterman’s talk show in 1997, Fox claimed he previously had Lyme DIsease from a tick bite, saying, ‘I got a dose of the Lyme. You feel like crap. l got bit by a tick,’ he confessed. ‘They’re really tiny. Then what happens is you get this little red mark. You think it’s a rash or you think it’s some bad thing, but it’s a tick bite. Then you are doomed because it’s already too late.’

Keep in mind, Fox was diagnosed with Parkinson’s in 1991 and didn’t disclose it to the public until 1999. If the tick bite and Lyme Disease part of the story is true, then Linda Ronstadt would be the second celebrity to be diagnosed with Parkinson’s Disease following a bout with Lyme Disease, strengthening the theories about a correlation between the two conditions.

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For many years it was also thought that actress Katharine Hepburn had Parkinson’s because of the tremor in her voice and body movements. She set the record straight in the 1993 TV documentary Katharine Hepburn: All About Me (1993) (TV), which she narrated herself, ‘Now to squash a rumor. No, I don’t have Parkinson’s. I inherited my shaking head from my grandfather Hepburn. I discovered that whiskey helps stop the shaking. Problem is, if you’re not careful, it stops the rest of you too. My head just shakes, but I promise you, it ain’t gonna fall off!’.

In 2003, her niece Katharine Houghton, confirmed in a television interview that it was not Parkinson’s disease, but a progressive ,albeit treatable, neurological disorder called essential tremor, that used to be called palsy. Her aunt’s form of it was called a familial tremor, which is inherited. Children of a parent with the disease have a 50 percent chance of inheriting a gene that causes it. 

Linda Ronstadt’s memoir, “Simple Dreams: A Musical Memoir” is slated for release on September 17, 2013. In the book, she does not discuss her diagnosis of Parkinson’s or her battle with the disease.

 

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The new global epidemic grows as physicians bicker over its existence and treatment 

New estimates released by the U.S. Centers for Disease Control and Prevention (CDC) paint an alarming picture of how big the Lyme Disease threat is in the country. Based on findings from three ongoing CDC studies, the preliminary estimates spike the number of Americans diagnosed each year with Lyme Disease to around 300,000 versus the previous estimate of 30,000.

That’s 821 cases per day.

A screengrab from the documentary 'Under Our Skin' shows a sign that says 'Warning - tick infested area - through a chain-link fence. Click on the photo to go to the documentary website.

 

Most Lyme Disease cases in the United States reported to the CDC through national surveillance are concentrated heavily in the Northeast and upper Midwest, with 96 percent of cases in 13 states:

Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Vermont, Virginia, and Wisconsin.

However, the non-profit Lyme Disease Association, Inc. (LDA), has compiled information from various sources that it says shows that Lyme Disease has been reported in all states, and believes, along with the CDC that many cases are going unreported or undetected. 

Global map from Gideon-Online shows various shaded areas depicting countries where Lyme Disease has been reported.

 

World-wide, the World Health Organization reports the bacterium that causes Lyme DIsease is found in forested areas of Asia, north-western, central and eastern Europe, although the LDA claims it has spread to other continents in over 80 countries.

Lyme Disease is caused by the bacterium Borrelia burgdorferi, a spirochete (identified in 1981 by Willy Burgdorfer) and is transmitted to humans through the bite of infected blacklegged ticks. Its name comes from the towns of Lyme and Old Lyme in Connecticut after a number of cases were diagnosed in 1975.

A screen grab from the documentary 'Under Our Skin' shows a microscopic view of the bacteria that causes Lyme Disease. Click on the photo to go to the documentary website.

 

Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called ‘erythema chronicm migrans’ which can resemble a bullseye target. But what makes it difficult to fully diagnose and gauge the true number of cases is that not everyone develops this rash or even remembers they were bitten by a tick.

Illustrations show different sizes of ticks compared to the size of a dime as well as the characteristic bullseye pattern left by a tick bite on the back of a man. The illustration also shows tips to prevent Lyme Disease such as: Wear repellent; check for ticks daily; shower soon after being outdoors; Call your doctor if you get a fever or rash.

 

This, in turn, can lead to diagnostic errors, especially since the bacterium that causes Lyme Disease is also called ‘The Great Imitator’ because it can spread to almost every part of the body and ‘imitate’ the symptoms of other diseases. It has been misdiagnosed as Chronic Fatigue Syndrome, ALS, Alzheimer’s Disease, Arthritis, Multiple Sclerosis and other auto-immune disorders.

 

Protect yourself against tick bites

Photo shows three people hikinh in a hillside using walking polls with dark-green fir trees in the background.

 

The International Lyme and Associated Diseases Society has some tips on protecting yourself from exposure to tick bites and preventing Chronic Lyme Disease:

1. Know that Lyme disease is a nationwide problem

Contrary to popular belief, Lyme disease is not just an “East Coast” problem. In fact, in the last ten years, ticks known to carry Lyme disease have been identified in all 50 states and worldwide. Although the black legged tick is considered the traditional source of Lyme disease, new tick species such as the Lonestar tick and a pacific coast tick, have been found to carry Borrelia burgdorferi, the corkscrew-shaped bacterium that causes Lyme disease.

Avoiding a tick bite remains the first step in preventing chronic Lyme disease. One needn’t have been “hiking in the woods” in order to be bitten by a tick. There can be ticks wherever there is grass or vegetation, and tick bites can happen any time of year. Spraying one’ s clothes with DEET-containing insecticide, wearing long sleeves and long pants, and “tucking pants into socks”, continue to be the best ways to avoid ticks attaching to the skin. But don’t forget the post-walk body check.

(Editors note: Also, keep sticky tape on hand at home to easily pick up any ticks you find around your home, and after any outdoor activity in an area where ticks have been found, throws your clothing into a hot clothes dryer for about 10 minutes to kill any ticks hiding in folds or seams.)

2. Check your tick facts

Ticks can vary in size from a poppy-seed size nymphal tick to a sesame-seed size adult tick. The ticks can carry other infectious agents besides the spirochete that causes Lyme disease, including Ehrlichia, Anaplamosis, Babesia, and Bartonella. Lyme disease can sometimes be hard to cure if these other infections are not treated at the same time.

3. Show your doctor every rash

(Editor’s note: If you find a tick, try to pull it out by lifting it with tweezers by grabbing as close as possible to the biting area. Do not squeeze the body or that will send blood and infection back into your body.)

Although the bull’s eye rash is the most famous, there are many other types of rashes associated with Lyme disease. In fact, Lyme disease rashes can be mistaken for spider bites or skin infections. Take photos and make sure a medical professional sees the rash before it fades.

4. Don’t assume that you can’t have Lyme disease if you don ‘t have a rash

Lyme disease is difficult to diagnose without a rash, Bell’s palsy, arthritis, or meningitis, but you can still have Lyme and not have any of those signs or symptoms. Many people react differently to the infection and experience fatigue, headaches, irritability, anxiety, crying, sleep disturbance, poor memory and concentration, chest pain, palpitations, lightheadedness, joint pain, numbness and tingling.

5. Do not rely on test results

Currently there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. False positives and false negatives often occur, though false negatives are far more common. In fact, some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results. As a result, the CDC relies on physicians to make a clinical diagnosis based on a patient’s symptoms, health history, and exposure risks. Doctors who are experienced in recognizing Lyme disease will treat when symptoms typical of the illness are present, even without a positive test, in an effort to prevent the development of chronic Lyme disease.

Read the other 5 Prevention Tips at www.Ilads.org

 

Symptoms of Lyme Disease infection

Photo shows results from a Google image search of Lyme Disease rashes including the bullseye pattern and other patterns.

 

Lyme Disease is one of 28 conditions that can be spread by ticks, and if left undiagnosed or untreated, it can quickly spread throughout the organs, the central nervous system and the brain, sometimes even before the ‘bullseye’ rash appears. Couple this with mis-diagnoses and a lack of proper treatment, and the Lyme Disease Association says the following symptoms can develop:

Several days or weeks after a bite from an infected tick, a patient usually experiences flulike symptoms such as aches and pains in muscles and joints, low-grade fever, and/or fatigue. But no organ is spared. Other possible symptoms include:

· Jaw — pain, difficulty chewing

· Bladder — frequent or painful urination, repeated “urinary tract infection”

· Lung — respiratory infection, cough, asthma, pneumonia

· Ear — pain, hearing loss, ringing, sensitivity to noise

· Eyes — pain due to inflammation, sensitivity to light, sclerotic drooping of eyelid, conjunctivitis, blurring or double vision

· Throat — sore throat, swollen glands, cough, hoarseness, difficulty swallowing

· Neurological — headaches, facial paralysis, seizures, meningitis, stiff neck, burning, tingling, or prickling sensations, loss of reflexes, loss of coordination, MS-like syndrome

· Stomach — pain, diarrhea, nausea, vomiting, abdominal cramps, anorexia

· Heart — weakness, dizziness, irregular heartbeat, myocarditis, pericarditis, palpitations, heart blockage, enlarged heart, fainting, inflammation of muscle or membrane, shortness of breath, chest pain

· Joint — arthralgias or arthritis, muscle inflammation and pain

· Other Organs — liver infection, elevated liver enzymes, enlarged spleen, swollen testicles, irregular or ceased menses

· Neuropsychiatric — mood swings, irritability, poor concentration, cognitive loss, memory loss, loss of appetite, mental deterioration, depression, disorientation, sleep disturbance

· Pregnancy — miscarriage, premature birth, birth defects, stillbirth

· Skin — single or multiple rash, hives

The symptoms may occur in any combination, in any sequence, and over any time frame.

A screengrab from the documentary 'Under Our Skin' shows a closeup of a newspaper with the headline: 'Battle Lines Drawn In Bitter Lyme Wars

 

Treatment of Lyme Disease infection and the debate over ‘Chronic’ Lyme Disease

The frontline of primary treatment for Lyme Disease is the use of the antibiotic Doxycycline for one to four weeks, which is effective against the Borrelia spirochete bacterium and other infections spread by ticks. Other antibiotics may be used for children under the age of 8  and women who are pregnant or nursing.

If caught early, the prognosis is usually good, and depends on how long the tick was attached. It takes 36 to 48 hours for the bacteria to move from the ticks body to its saliva. A single dose of doxycycline given within 72 hours after the removal of a tick that’s engorged or has been attached for 36 hours may reduce the risk of developing Lyme Disease.

However, late diagnosis and treatment results in a more dismal picture. In 2005, a meta-analysis which studied results from a number of studies concluded that some late-stage Lyme Disease patients present a level of symptoms and physical disability on par with patients suffering from congestive heart failure.

The big and bitter debate between scientists, physicians and patients occurs collides when patients claim a long-term or ‘chronic’ case of Lyme Disease and want antibiotic treatment beyond the recommended duration, something the majority of scientists and physicians say is ineffective and dangerous.

A patient advocacy group, the Lyme Disease Association, sums it up by saying, ‘Those working in academia and conducting clinical trials for pharmaceutical companies and government tend to assert that Lyme disease is overdiagnosed, while hands-on Lyme clinicians say it is underdiagnosed. 

The issue is critical. If a doctor sees Lyme disease as under-diagnosed and thus treats all comers, the actual diagnosis might remain unrecognized and untreated while unnecessary use of antibiotics might lead to antibiotic-resistant infections in the human blood reservoir at large.

On the other hand, if a doctor sees Lyme disease as overdiagnosed and thus hesitates to treat, patients will go on to develop late stage, disseminated Lyme disease.

Tens of thousands of Americans are tragic testimony to option number two. By the time such individuals are finally diagnosed, they are often simply too sick to respond to a single month of antibiotics. Either they must accept the guidelines of IDSA (Infectious Diseases Society of America) and Yale physicians that they now have the incurable and debilitating autoimmune disorder known as “Post-Lyme Syndrome,” or they must find a physician who believes that longer-term antibiotic treatment at a higher dose may eradicate the spirochete that conventional therapy could not.’

 

A screengrab from the documentary 'Under Our Skin' shows someone holding a foam hand with the words 'Hands Off My Lyme Doctor'

 

Such physicians have been harder to find as many have abandoned treating Lyme Patients because insurance companies won’t pay for long-term treatments and many risked facing malpractice charges and losing their licenses if they administered long-term antibiotic treatments.

It’s likely the revised estimates that began this article will fuel even more rancorous debate and we will continue to follow it, so check back often for additional information and links in our ongoing coverage of Lyme Disease.

More to come . . . in the meantime here are some thought-provoking moments in an extended trailer from a 2008 film called, ‘Under Our Skin’, made by Andy Abrahams Wilson whose sister contracted the disease.

 

AbledLinks:   Lyme Disease Association  |  American Lyme Disease Foundation

 

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