Love Letter: A Family Obsessed With Money
Discussing the price of something is like breathing to them.
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By Miya Lee
Taryn Englehart and her family talked a lot about money. They scrutinized the cost of everything , and they openly judged each others purchases.
But when Ms. Engleharts mother was diagnosed with an atypical form of Parkinsons disease, her family learned what was truly priceless. Ms. Englehart writes about her familys relationship to money in her Modern Love essay, How Much Was That?
We want to hear your stories.Heres how to submit a Modern Love essay or an Unhitched column. Dont feel like writing more than two tweets, an Instagram caption or a Facebook post? Consider submitting to Tiny Love Stories, which are no more than 100 words.
Parkinsons: A Progressive Incurable Disease
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By Denise Grady
Muhammad Ali, who died on Friday after a long struggle with Parkinsons disease, was given the diagnosis in 1984 when he was 42. The world witnessed his gradual decline over the decades as tremors and stiffness set in, replacing his athletic stride with a shuffle, silencing his exuberant voice and freezing his face into an expressionless mask.
Diagnosis Parkinsons Disease: You Are Not Alone
This 25-minute video was created to provide some comfort and encouragement for a person who has just been diagnosed with Parkinsons disease. It includes testimonials from people with Parkinsons on how they learned to cope and live with the diagnosis, scientific and medical information from healthcare experts and helpful tips and resources.
Recommended Reading: Parkinsons Hallucinations Commercial
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The Importance Of Establishing Parkinsons Prevalence Numbers
Parkinsons Prevalence estimates will help the Parkinsons Foundation attract the attention of federal and state government as well as the pharmaceutical industry to the growing need and urgency in addressing PD. This is an important first step to better understanding who develops PD and why.
The next phase of this study will be to determine the rate of PD diagnosis or incidence, how that has changed over time and what is the rate of mortality among those affected by PD. Determining the prevalence and incidence will allow the PD community to effectively advocate for additional money and resources necessary to support Parkinsons research.
Parkinsons Foundation Prevalence Project numbers highlight the growing importance of optimizing expert Parkinsons care and treatment for people with Parkinsons, which would help future caregivers and ease the strain on health and elder care systems.
By supporting this study, the Foundation works to better understand Parkinsons with the goal of solving this disease. Establishing these numbers and using them to educate PD communities and influence legislation will help the foundation provide tailored resources, outreach and advocacy to the underserved PD populations across the nation. The entire published study is available in the Parkinsons Foundation scientific journal, npj Parkinsons Disease.
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Exercise May Aid Parkinsons Disease But Make It Intense
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Intense treadmill exercise can be safe for people who have recently been given diagnoses of Parkinsons disease and may substantially slow the progression of their condition, according to an important new study of adults in the early stages of the disease.
But the same studys results also indicate that gentler exercise, while safe for people with Parkinsons, does not seem to delay the diseases advance.
As most of us know, Parkinsons disease is a progressive neurological disorder that involves problems with motor control. Symptoms like weakness, stiffness, loss of balance and falls can make exercise difficult and potentially hazardous. Though Parkinsons is currently incurable, its symptoms can be eased for a time with various drugs.
But most of those drugs lose their effectiveness in people over time.
So some researchers have begun searching for other treatment options, particularly for use in the beginning stages of the disease. If people with early Parkinsons could brake the diseases advance and delay their need to start medications, the researchers have reasoned, they might change the arc of their disease, delaying its most severe effects.
The others were assigned to start exercising.
The researchers asked to be told about any injuries among the volunteers.
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The Voices Of Parkinsons Disease
For many people, our only experience with Parkinsons disease is that of watching actor Michael J. Fox struggle publicly with the illness as he has campaigned for more research and funding.
But as my colleague Karen Barrow notes in the latest Patient Voices feature, there are many less-famous faces of Parkinsons.
Parkinsons disease is a neurologic disorder that occurs as a result of the death of nerve cells in the brain that produce dopamine. The loss of dopamine production in the brain can lead to tremors, balance problems, stiff facial expressions and muffled speech, among other things.
In the United States, an estimated 1 million people have the disease, and another 60,000 are diagnosed each year. Although the condition usually develops after the age of 60, 15 percent of those diagnosed are under 50.
One of those is runner Alyssa Johnson, 43, who was training for the Boston Marathon in 2003 when she started dragging her leg and developed a shin cramp. After searching for answers, she was finally diagnosed with Parkinsons.
Its not something youd expect with someone my age, she said. I used to run with my husband all the time. We dont run together anymore because its still too hard for me emotionally. Hes still competitive, and Im still trying to get from point A to point B.
What Treatments Can We Expect In The Near Future
It is crucial that neuroprotective agents are found to slow or halt the progression of Parkinsons disease. However, fundamental questions remain about the design of neuroprotection trials, particularly delayed start trials and futility studies.
Continuous dopaminergic stimulation throughout 24 hours may reduce motor complications by avoiding pulsatile stimulation of dopamine receptors. The new dopamine agonist rotigotine has been formulated in a transdermal delivery system that provides 24 hour stimulation. Once daily, prolonged release versions of the non-ergot agonists pramipexole and ropinirole are undergoing clinical trials and should be available in the next few years.
Much effort has gone into developing non-dopaminergic agents for parkinsonian symptoms and/or dyskinesias . However, many such agents have proved disappointing in clinical trials, perhaps because animal models do not truly reflect Parkinsons disease.
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Parkinsons : Parkinsons Basics
Over nearly 2 hours this webinar covers the basics of Parkinsons Disease , including terminology, disease stages, causes, symptoms and your care team. Following the basics, a woman with PD speaks about the benefits of exercise in slowing PD progression, and her husband who explains why care partners should participate in the same exercises.
Telehealth For People With Pdrds: Clinical Outcomes And Patient Preferences
Neurologists, especially movement disorder specialists, are scarce in certain areas of the country, and travel to these outpatient clinics presents a major burden for patients and caregivers . Even people with PDRDs who are local to their neurologist may choose to be seen using telehealth intermittently if they have motor or non-motor symptoms that make leaving their home difficult at the time of their visit. The flexibility of being able to turn an in-person outpatient visit into a telehealth visit provides reassurance to patients with significant symptom burden that they will continue to have the same access to the neuropalliative care team despite having symptoms that impair mobility and travel. As PDRDs progress, most patients will become homebound, making telehealth an even more important way to provide neurological specialty care for these serious, life-limiting neurodegenerative illnesses . Validation of a modified version of the internationally recognized Unified Parkinsons Disease Rating Scale and the Montreal Cognitive Assessment that can be administered remotely allows for standardized assessments to be used in remote clinical and research visits. Two recently published randomized controlled clinical trials showed that outpatient care for people with PD provided via telemedicine was equivalent to the care provided in-person for people with PD, but telemedicine was significantly preferred to in-person visits, saving a median of 88 minutes and 38 miles per visit .
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Oleh Hornykiewicz Who Discovered Parkinsons Treatment Dies At 93
His research into dopamine led to the mainstay treatment still used today to treat millions of people with Parkinsons.
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By Sam Roberts
Oleh Hornykiewicz, a pharmacologist whose breakthrough research on Parkinsons disease has spared millions of patients the tremors and other physical impairments it can cause, died on May 26 in Vienna. He was 93.
His death was confirmed by his longtime colleague, Prof. Stephen J. Kish of the University of Toronto, where Professor Hornykiewicz taught from 1967 until his retirement in 1992.
Professor Hornykiewicz was among several scientists who were considered instrumental in first identifying a deficiency of the neurotransmitter dopamine as a cause of Parkinsons disease, and then in perfecting its treatment with L-dopa, an amino acid found in fava beans.
The Nobel laureate Dr. Arvid Carlsson and his colleagues had earlier shown that dopamine played a role in motor function. Drawing on that research, Professor Hornykiewicz and his assistant, Herbert Ehringer, discovered in 1960 that the brains of patients who had died of Parkinsons had very low levels of dopamine.
His findings spurred the establishment of human brain tissue banks, research into dopamine, and treatments of other diseases caused by low levels of neurotransmitters.
Keeping Parkinsons Disease A Secret
When Nancy Mulhearn learned she had Parkinsons disease seven years ago, she kept the diagnosis mostly to herself, hiding it from friends, colleagues even, at first, her mother, sister and teenage children.
After seven months, she decided she had to tell her family, and they settled into an unspoken agreement not to talk about the disease. She also realized her colleagues already suspected the truth: One asked why she had trouble applying her lipstick. She sometimes could not control her shaking hands.
Still, it was years before Ms. Mulhearn, now 51, of Bethlehem Township, N.J., felt she could talk freely about her condition. Ms. Mulhearn, a school secretary, regrets having waited so long.
I didnt want anybody to feel sorry for me, she said. To have people look at you and start crying thats not what anyone wants.
In that, Ms. Mulhearn is hardly alone. Doctors and researchers say its not uncommon for people with Parkinsons to conceal their diagnoses, often for years. But the secrecy is not just stressful to maintain experts fear that it also may be slowing down the research needed to find new treatments.
Parkinsons disease progresses over many years as brain cells that produce dopamine, a neurotransmitter, slowly waste away. Without dopamine, nerves have trouble sending messages muscle movement becomes erratic and difficult to control. Some patients, though not all, experience memory problems, altered speech, cognitive difficulty, insomnia and depression.
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Heart Risks Tied To Parkinsons Disease
Abdominal obesity, high triglycerides, high cholesterol, high blood pressure and high glucose readings were linked to an increased risk of developing Parkinsons disease.
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Symptoms of poor cardiovascular health may be linked to an increased risk for Parkinsons disease, a new study has found.
Researchers used data on 17,163,560 South Koreans over 40 years old and found 44,205 cases of Parkinsons over the course of a five-year follow-up. They looked for five cardiovascular risk factors that define the metabolic syndrome: abdominal obesity, high triglycerides, high cholesterol, high blood pressure and high glucose readings. The study is in PLOS Medicine.
After controlling for age, sex, smoking, alcohol consumption, physical activity, income, body mass index and history of stroke, they found that each component of the metabolic syndrome significantly increased the risk for Parkinsons disease.
The more risk factors a person had, the greater the risk. Compared with having none of the risk factors, having all five was associated with a 66 percent increased risk for Parkinsons disease. The association was particularly strong for people over 65.
There are about 60,000 new diagnoses of Parkinsons each year in the United States, and about a million Americans are living with the disease.
Through His Eponymous Foundation The Famed Actor
As Marty McFly, he took us Back to the Future. Now, through his work leading The Michael J. Fox Foundation for Parkinsons Research , actor and activist Michael J. Fox is helping to usher in a new future for people with one filled with hope. I know without fail that we are getting closerday by day, year by yearto the breakthroughs that will make finding a cure inevitable, Fox tells Neurology Now. A lot of work lies ahead of us. But this is a responsibility we have, and we want people to know someone is trying to get this work done.
Parkinsons disease is a central nervous system disorder in which the brain has difficulty controlling the movements of the body. In people with PD, the brain cells that make dopamine dont function normally, which causes trouble with body movement. Some of the classic symptoms of the disease are rigidity, stiffness, stooped or forward-leaning posture, and shuffling gait, says J. William Langston, M.D., the founder, chief executive officer , and scientific director of The Parkinsons Institute in Sunnyvale, CA. Like over one million Americans, Michael J. Fox has PD.
Called the most credible voice on Parkinsons disease research in the world by The New York Times, MJFF is the worlds largest private funder of PD research, having contributed more than $270 million toward their goal of finding a cure. Along the way, the organization has helped improve the way research is funded and conducted.
Fox Trial Finder
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Looking For Parkinsons Sooner
Personal Health
The Holy Grail in any progressive disease is to find it early enough to start effective treatment before irreversible damage has occurred. For Parkinsons disease, which afflicts 1.5 million Americans and growing, a new study has brought this goal a little closer.
The study, conducted among more than 54,000 British men and women, identified a slew of symptoms that were more likely to be present in people who years later were diagnosed with Parkinsons. The findings underscore the prevailing view among neurologists that the damage caused by this disease begins long before classic symptoms like tremors, rigidity and an unsteady gait develop and a definite diagnosis can be made.
The study, by Dr. Anette Schrag and fellow neurologists at the University College London, was . As many as five years before a diagnosis of Parkinsons, those who developed it were more likely to have experienced tremor, balance problems, constipation, low blood pressure, dizziness, erectile and urinary dysfunction, fatigue, depression and anxiety.
In addition, Dr. Claire Henchcliffe, director of the Parkinsons Disease and Movement Disorders Institute at Weill Cornell Medical Center, said that REM sleep behavior disorder, characterized by a tendency to act out ones dreams while asleep, is one of the strongest prediagnostic symptoms, along with a lost sense of smell and subtle changes in cognition.
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Parkinson’s Disease: New Diagnosis Workshop Part 1
Part one of this three-part workshop is one hour long. Movement disorder specialist Dr. Jonathan Squires provides an overview of Parkinson’s Disease . He explains what we know about the mechanism causing the disorder, shares risk factors for PD and how a diagnosis is made, discusses typical disease progression, pre-motor symptoms, motor and non-motor symptoms.
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A Portrait Of Parkinsons Disease
Karen Alexander says she is one of the lucky ones. Ten years after learning she has Parkinsons disease, she takes two drugs to control her symptoms and so far has few of them. A tremor on her left side can make it hard to balance a teacup and saucer, but at 74, it doesnt bother me much, she said. Luckily, Ms. Alexander, who lives in a suburb west of Chicago, is right-handed.
Each year more than 50,000 elderly Americans like her are given a diagnosis of Parkinsons disease, typically evidenced by tremors and, eventually, rigid limbs and difficulty moving. It is not an obscure disease, but neurologists often have trouble identifying it in its early stages. A sizable number of cases are misdiagnosed, and many patients receive inappropriate treatments that can have harmful side effects. But that may change later this year when a newly approved brain scan technique becomes widely available.
Parkinsons disease currently does not have definite diagnostic tests, said Todd Sherer, chief program officer at the Michael J. Fox Foundation for Parkinsons Research in New York. Dr. Sherer said the new brain scans would expedite trials seeking new treatments, which researchers hope will slow and one day reverse the progression of Parkinsons.
There has been a resurgence of interest in Parkinson therapies by drug companies, said Joyce Oberdorf, president of the National Parkinson Foundation, based in Miami.
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Scott Klempan 53 San Anselmo Calif
Scott Klempan, a carpenter, suspected he had Parkinsons disease at age 42 when he began to have shoulder pain and a small tremor in his hand. His doctor dismissed his suspicions and told him he had a frozen shoulder. A year later his symptoms progressed, and the diagnosis was confirmed.
Mr. Klempans disease worsened significantly over the next five years: He could no longer work, and simple tasks like changing his shirt became a struggle.
In 2003, Mr. Klempan elected to undergo deep brain stimulation surgery to help control his symptoms. It took nine months for doctors to calibrate the stimulation going from the battery packs in his chest into the different areas of his brain, but once that was done, Mr. Klempan was able to sharply lower the amount of medication he needed to control his symptoms.
Soon after the surgery, Mr. Klempan was able to resume an active life that includes skiing, mountain biking, painting and fishing. Mr. Klempan has not been able to return to work full time but says the surgery was the best decision he ever made. It has given me my life back, he says.
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