Essential tremor: Aiken resident lives with, raises awareness of disease
Stephanie Turner Email stephaniedturnerAS
Oct 11 2015 3:47 pm
Staff Photo by Stephanie Turner
Diann Shaddox was diagnosed with essential tremor in her early 20s. Today, she is the founder of the Diann Shaddox Foundation, which raises money and awareness of essential tremor, and is an author, with her first book “A Faded Cottage” also featuring the main character with the disease.
You’re out enjoying a meal with your friends, when you hear a clattering behind you.
Curious, you look over your shoulder to see another patron trying to grasp his fork with a trembling hand.
“Essential tremor (ET) is a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk."
It is said to affect at least seven million Americans, according to a 2014 “Tremor and Other Hyperkinetic Movements” journal article.
“Everyone has some ... tremor. But these movements usually can’t be seen or felt. It’s Hopkins Medicine.
Diann Shaddox, an Aiken resident in her late 50s, discovered she had ET in her early 20s.
Her hands would start to shake while she was just doing normal tasks, she said in her biography.
“In the beginning, doctors told me to go home, (that) I was nervous,” she said.
Shaddox knew that wasn’t true, so she bypassed the doctors and went straight to a neurologist, who immediately knew she had ET.
Last year, Shaddox began the Diann Shaddox Foundation with Randy Miles as the executive director; Quaid Witherspoon, the protagonist of her 2013, debut book, “A Faded Cottage: A South Carolina Love Story,” also has ET.
“Essential tremor (ET) is the most common movement disorder. It is a progressive, often inherited disorder that usually begins in later adulthood,” according to John Hopkins. “Essential tremor is thought to be caused by electrical fluctuations in the brain that send abnormal signals out to the muscles.”
The gene that causes ET has not been identified, and how it’s inherited, if the person does inherit it, differs among patients, according the National Library of Medicine’s Genetics Home Reference.
In some causes, “they almost know it’s coming, because generation after generation have a pretty pronounced tremor,” said Dr. Michelle Lyon, Carolina Musculoskeletal Institute’s neurologist.
Staff Photo by Stephanie Turner Dr. Michelle Lyon is the neurologist at Carolina Musculoskeletal Institute
Since Shaddox’s father passed away before she was born and her mother died when Shaddox was a toddler, she isn’t completely sure how she got her ET, though she suspects it’s from a great aunt whose hands would shake.
“In most affected families, essential tremor appears to be inherited in an autosomal dominant pattern, which means one copy of an altered gene in each cell is sufficient to cause the disorder, although no genes that cause essential tremor have been identified,” according to the National Library. “Essential tremor may also appear in people with no history of the disorder in their family.”
There is no genetic test to detect whether or not you will get ET, Lyon said.
“Your health care provider will ask you questions about your health history and family history. He or she will also look at your trembling symptoms. Your provider will probably need to rule out other conditions that could cause the shaking or trembling,” according to John Hopkins.
ET is often confused with Parkinson’s disease, which affects less people and is more detailed in its symptoms than ET, according to Lyon.
Parkinson’s, for example, “generally involves slow movements (bradykinesia), rigidity (stiffness) and problems with walking or balance,” whereas those symptoms are abnormal in people with ET, according to the International Essential Tremor Foundation.
Living with ET
“This (condition) affects all nationalities, all sexes, all ages – all everybody,” Shaddox said.
In addition to running the Diann Shaddox Foundation and publishing “A Faded Cottage,” Shaddox has written time-traveling romance “Whispering Fog” and the historical “Miranda: Her Life’s Story,” with proceeds from her books benefiting her foundation.
The condition first affected her right hand before progressing to her left.
Shaddox can no longer write for extended periods; when she does write, the words are often scribbled.
“If you are right handed, don’t use your right hand; (then) write your name when you are tired, and just keep writing your name, until your hand gets tired. That’s kind of like ET,” she said. “Really simple acts can be horrifying.”
Trouble with writing and eating are often when people come in to get examined, according to Lyon.
“They are embarrassed to go out to eat at a restaurant because they are unable to hold the fork and cut the food,” she said. “I think a lot of people ignore it, until they get to that social situation.”
Shaddox often has to use her opposite hand to steady the one cutting food or putting on make-up and can no longer cross-stitch or play the piano.
Though her hands trembling are the more noticeable symptom, Shaddox’s head shakes back and forth, and she can feel her voice starting to tremor.
“I’ll take two (words) and make up a whole new word while I’m talking,” she said, adding that she also mixes up and forgets words.
The tremors tire her hands but do settle when the limbs are resting, and Shaddox can drive.
“My case is mild,” she said.
Stress, hunger, fatigue and anger can aggravate the tremors, according to the National Institute.
“My hands look like a bird’s wings flapping, when I get stressed,” Shaddox said. “It’s so embarrassing when you are sitting there, and people are staring at you when you are trying to write. You want to scream, walk out, because it’s embarrassing.”
ET has no cure but can be treated, according to Lyon.
Medicines prescribed can include tranquilizers, ones that “affect how brain nerves work” or are anti-seizure, according to John Hopkins.
When the condition is so severe and medicine doesn’t help, there are surgical options, Lyon added. Two are deep brain stimulation and thalamotomy, with the main difference is thalamotomy, which, according to the American Academy of Neurology, actor Micheal J. Fox underwent for his Parkinson’s, involves destroying a piece of the brain while deep brain stimulation does not, according to the International Essential Tremor Foundation.
MCT Graphic/”Minneapolis Star Tribune,” 2009 This graphic explains how deep brain stimulation, using a device similar to a heart pacemaker, can improve the quality of life for people suffering from Parkinson’s disease. The procedure is also used in more severe cases of essential tremor.
Shaddox no longer takes medication but does lift weights and tries to stay healthy.
When she does her public appearances, she might have some wine nearby, as the drink temporarily calms her, she said.
Shaddox has 16 more books she wants to publish and would like to see her foundation match the The Michael J. Fox Foundation for Parkinson’s Research’s scale.
Shaddox said the foundation’s An Evening in the 1800s with Kim Peevy that was scheduled for Saturday has been postponed but she will have a book signing in April.
“The foundation’s mission is to bring awareness, to educate,” Miles said.
If you are experiencing abnormal tremors, consult with a physician.
For more information on ET, visit www.diannshaddoxfoundation.org, www.aan.com, andwww.essential tremor.org.
Stephanie Turner graduated from Valdosta State University in 2012. She then signed on with the Aiken Standard, where she is now the arts and entertainment reporter.
The mission of the Diann Shaddox Foundation for Essential Tremor is to educate and increase awareness about people who have ET and to donate medical research grants to doctors and other investigators to find a cause and cure for ET.
“We have to make a difference because of the millions of people who have ET who are living every day with tremors of the head, the voice, the hands, the entire body. We have to make a difference and change the way they live,” said Shaddox.
Poovey, who has traveled the Southeast for more than 18 years, performs in period attire and portrays historical characters, including Jane Austen, Scarlett O’Hara and Emma Victoria Brown, the main character in her novel “Truer Words.” Her presentation includes period fashion, mourning practices and other topics from the Victorian era.
In 2011, Poovey portrayed Mrs. Stanton, wife of Secretary of War Stanton, played by Kevin Kline, in the Robert Redford film “The Conspirator.” Poovey portrayed the wife of a villainous husband in the Vook version of Jude Devereaux’s novella “Promise” and appeared in the Fireball Run fundraising series 2012, “Southern Excursion,” at Frampton Plantation in Yemassee.
Published and released by Tate Publishing in May 2012, “Truer Word” is set on a wealthy plantation in South Carolina’s Lowcountry during the Victorian era. The book tells the story of Emma Victoria Brown’s joy, sorrow and Civil War experience as she faces the challenges of life in the 19th century.
When not writing or performing, Poovey, who lives in Beaufort, is a school psychologist.
Tickets are available online at www.diannshaddoxfoundation.org or by sending a check to 241 Boxelder Drive, Aiken, SC 29803.
Tickets also are available at Aiken’s Kitchen, 448 Fabian Drive; Family Pharmacy, 110 Price Ave.; and 333 Newberry St. S.W.; 3 Monkeys, 141 Laurens St. S.W.’ and Plum Pudding, 101 Laurens St. N.W.
Seating is limited.
All proceeds are tax deductible and go to the Diann Shaddox Foundation for Essential Tremor to find a cure for ET.
For more information, call 803-641-0650 or send an email to firstname.lastname@example.org.
A native of Aiken, Larry Wood covers education.
Disability Benefits for Essential Tremor
If your tremor is so serious that you can no longer work because your hands shake too much or you have other disruptive symptoms, you may be able to get federal disability benefits. The Social Security Administration administers two programs: Social Security disability (SSD) and Supplemental Security Income (SSI). The medical eligibility requirements for both programs are the same.
First, your tremor must have prevented you -- or be expected to prevent you -- from doing a significant amount of work (making over $1,070 per month) for at least 12 consecutive months. Second, you must either prove that you don't have the ability to function at a sedentary job or that your tremor fulfills the requirements for Social Security's impairment listing for Parkinson's disease.
Determining Your Ability or Inability to FunctionTo decide whether there is any work you can do, the SSA will prepare a detailed report called a residual functional capacity assessment (RFC). An RFC is the most you can do on a regular and sustained basis (full-time work). The report will look at how your tremors affect your ability to do certain strength-related (exertional) activities like:
Considering Your Non-Exertional LimitationsBefore deciding that you can do the full range of activities to do sedentary work, the SSA should consider any "non-exertional," or non-strength-related, limitations that you have. Your RFC assessment should address whether your tremors, or your medications, cause any non-exertional limitations. Here are some examples of non-exertional impairments:
Examples of How Essential Tremors Affect the RFCHere are some examples of how the SSA may use a claimant’s RFC (including non-exertional limitations) to decide a claim for disability based on a benign essential tremor.
The SSA should use your medical records to compare your symptoms with the listing requirements for Parkinson’s to determine if they are “medically” equivalent. But it is often up to the claimant (or his or her lawyer) to raise this theory on appeal.
Here is an example of how the SSA might decide a case based on equivalence to a listing.
Diann Shaddox's Story
Diann was born on December 18th in a small southern town of Nashville, Arkansas, the youngest and only daughter of William and Mary Ann Shaddox. But, fate stepped in and William, a crop-duster, at the age of 25, died in a plane crash on November 20th, a month before she was born, therefore, Diann was never able to meet her father. Mary Ann, who grew up in Miami, Oklahoma, moved back to Miami after William’s death, where Diann lived until her mother died when she was only 3 years old. Diann then moved to Nashville, Arkansas to live with her grandparents. At the age of 10, Diann’s Granddad Holt died of a stroke, leaving her grandmother alone to see to her.
Diann learned from an early age about death and how life should not be squandered. Her Mamow Holt, who had lost her right hand in an accident at a factory in Nashville, Arkansas, taught her that you never give up. Her grandmother never let anything stand in her way. She taught herself to write, cook, and even how to sew and make quilts with her left hand, without any prosthetics. Being handicapped was a word she never used.
Growing up in a small town was wonderful, learning to fish, growing a garden and the most important thing, patience of a grandmother. Stories from the past evolved of family bringing many stories to life. Sitting out late at night on cool summer evenings, swinging on an old swing staring up at the stars helped Diann’s vivid imagination grow.
She has an enthusiasm for travel and living life to its fullest. You have only one life and shouldn’t waste it. The zest for meeting and getting to know people is a very important component in her life. She is a believer of herbs, natural and organic foods, and a big supporter of Bio-identical Hormones and keeping our planet green.
Diann has lived in eight great states, Arkansas, Oklahoma, Kentucky, New Jersey, Virginia, Texas, and Florida. South Carolina is now her home with her husband, Randy, her greatest supporter.
Living with Essential Tremor
I was in my early twenties when life changed for me. My hands began to shake when I’d do tedious work. No one, not even doctors, could figure out what was happening and they, the doctors, believed I was nervous and I just needed to calm down.
One day, when I was standing at the post office window in Louisville, Kentucky changed my world. You see a simple form containing my name and address I wasn't able to fill out. I could hear the whispers and comments from people standing in line behind me The confused look of the post office worker's face told the entire story.
I had been taught not to show my feelings in public, but tears flowed down my face as I raced, clutching my package in my arms, out of the building. That one day I had to find my answer and I went out on my own to figure out what was happening to me. Without my GP or insurance permission, I found a Neurologist and made an appointment. That day in the doctor’s office, I finally made the discovery that I had Essential Tremors.
I was relieved to know what I had, but didn't really understand what Essential Tremor was. I thought I was the only person with this problem and didn't bring it up with my friends and family, unless someone asked.
Not letting anything deter me, I continued life with the determination that I’d learned from my grandmother. I was unrelenting to do tedious work like counted cross-stitch on linen, and playing the piano even with trembling hands. It was as if my mind would relax letting my hands work without thinking. I learned to hide my hands out in public, to grip my drinking glass with both hands, and how to use my body for cover as much as possible.
Things seemed to be working for many years, but on my birthday, December 18th, 2010 my hands were shaking uncontrollably, 2010 had been a year when many people began to question and stared at me wondering why I was nervous or thinking maybe that I was just weird. Being out in public was difficult, the stares were tough, and once more, the simple feat of filling out forms was devastating. Even being in a doctor's office was difficult, as they, nurses, questioned why I was so nervous and shaking so much, giving me stares.
That night of December 18th, I sat in my office and anger grew watching my hands quiver as they hovered over the keyboard, and for once in my life I felt sorry for myself. The question of why, a question without an answer played in my mind. Being a writer the words began to flow and Quaid Witherspoon, a famous artist, was born. A man who had everything or so he thought, but now his hands had deserted him and his life of painting had ceased, becoming a bitter man. The story of Quaid Witherspoon, the novel 'A Faded Cottage', became an incredible love story, one about strength of mind to fight fate and never accept what life throws at you.
I found out that I wasn't alone and millions of people worldwide had Essential Tremor. I began to do book signing and would ask if anyone knew what Essential Tremor was. Again, I was shocked that no one knew what ET was even though it is the largest and most common movement disorder, 10 times larger than Parkinson’s. It seemed that 99% of the time the answer was no. Many police departments even answered the same.
Through this process of bringing A Faded Cottage to life, I have learned so very much. Finding the ET Facebook groups, talking and listening to everyone’s stories at book signings, stories that are so similar to mine, has brought calmness to my life. We have to tell others about ET, so people who live with ET aren't sitting alone wondering why this is happening to them.
Even though the stares will forever be, I won’t give up. Now, I’m even more determined the word will spread about Essential Tremor and I’m going to help make it happen. For each book sold of “A Faded Cottage,” 100% of the sales will go to Diann Shaddox Foundation for Essential Tremor to make a difference.
What is Essential Tremor?
Essential Tremor is the largest and most common movement disorder in the world and is 10 times larger than Parkinson’s. Essential Tremor (ET) is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs, or trunk. Over 10 million Americans, including children, have Essential Tremor. That’s about 5% of all people in the United States. For comparison sake 7.8% of the population have some type of diabetes. Most people though haven’t heard about Essential Tremor and the Diann Shaddox Foundation for ET is adamant to bring attention to the world.
First and foremost, ET can begin at any age, from ages 1 to 100. ET doesn't discriminate with age, race, sex, or national origin. The Diann Shaddox Foundation for Essential Tremor can make a difference in millions of people’s lives and directly change the future for everyone who will inherit or develop ET but we need your help. We want to show that Essential Tremor isn’t just for the elderly, but children of all ages have ET. Many people with ET have lost their jobs and college students are having their dreams of special careers disappear before they have a chance to begin. We have to bring people out of hiding and educate teachers in school so children and teens aren’t bullied about their tremors. The stories are endless from people with Essential Tremor struggling with depression. We will make a difference and bring awareness to businesses, schools, and first responders.
Diann Shaddox is Founder of Diann Shaddox Foundation for Essential Tremor, author, mother, grandmother. Diann has been an activist for ET and been working to bring awareness to the world through ‘A Faded Cottage’ a SC love story about an artist who develops ET.Diann is adamant to bring a change in movement disorders because she has ET. 100% of the sales of Diann's book, A Faded Cottage go to Diann Shaddox Foundation to help find a cure for Essential Tremor.
Diann is also the author of "Whispering Fog" a time travel & Miranda, a love story.
Diann learned from an early age things may look impossible, maybe risky or pointless, but you have to give it a try or you'll never know if you don't give yourself a chance.
A FADED COTTAGE
When a love letter written by a teenage boy becomes lost after a summer filled with passion, it brings about an incredible love story of two people being reunited, after thirty years.
When Essential Tremors take over a famous artist’s body, a simple feat of holding a paintbrush turns Quaid Witherspoon’s life upside down, becoming a bitter man. This is his journal of how he battles fate, not of his entire life, but of two weeks. Quaid had everything money could buy, except the two things he loved the most, his love of painting great masterpieces, and the only woman he had ever loved. The calming waters off the coast of South Carolina calls Quaid back to Hathaway Cove, to a small, faded cottage, one with a leaning front porch, worn paint so similar to him, flawed. The same beach where he began painting as a young boy, the place he met his one true love, and the place he let her go.
Sandy, Quaid’s love from his past, learns he is wondering about her, just as she is wondering about him. Their love is alive, meeting for the first time in thirty years, letting the years fade away, but fate has another twist. Sandy keeps a secret, letting them have their two weeks.
What if you were able to relive your life and rediscover you teenage love… Would you?
To learn more about Diann go to: www.diannshaddox.com
Don't forget to stop by and visit #Tuesday June 23, 2015 at Avondale Wine & Cheese for a #fundraiser for the Diann Shaddox Foundation for#EssentialTremor #share.
Avondale Wine & Cheese is hosting a fundraiser for the Diann Shaddox Foundation for Essential TremorTuesday June 23, 2015 from 6-8 pm. For every glass of wine sold during the event Avondale Wine and Cheese will donate $1 to the Diann Shaddox Foundation. From 4-6 p.m. Diann Shaddox Author will be signing copies of “A Faded Cottage" a SC love story & "Whispering Fog" a time travel. Avondale Wine & Cheese Charleston Magazine Charleston Living Where Charleston
813B Savannah Hwy, Charleston, South Carolina 29407
— at Avondale Wine & Cheese.
This weekend was packed full of drama. We, the authors/artist at the Folly Beach Wine & Sign, a fundraiser for the Diann Shaddox Foundation for Essential Tremor, knew the forecast was for rain, but being diehards we decided to give Saturday a chance. Little did we know that we would be in the Perfect Storm.
The slow rain began and all was well… for about fifteen minutes, then the storm hit. Strong winds & heavy rain began and started lifting tents, which were strapped down pulling them loose, making them dance twirling like ballerinas. Everyone rushed outside to save the tents. We looked like a crew on a ship battening down the hatches with gust of wind and rain beating down on us. The wind did win taking a few large boards off the arbor of the SC Parks & Recreation & Locklear’s Beach City Grill, but we were able to save the tents.
Since we had won the battle with the storm we decided to extend the Folly Beach Wine & Sign for a second day. The next day, Sunday, was a beautiful day with blue skies and temperatures in the low 70’s. The winds were still gusty but the day was a perfect day.
I had the best time and want to say thank you to the SC Parks & Recreation, Locklear’s Beach City Grill, all our authors/artists, (who had a wonderful sense of humor), and everyone that came out to support our event and help raise money for the Diann Shaddox Foundation for Essential Tremor.
I met so many great people, Linda, Jeff, Elaine, Matthew, Peggy, Bill, Trudy, Mandy, Kirtland, Frank, Kathy, Lourie, and so many more.
We had so much fun that we have decided the next Folly Beach Wine & Sign will be held on Saturday & Sunday.
I have had familiar tremors since 2008 and was on primidone and propractinol but propractinol made me to drowsy to drive so was taken off.My general Manager at a optical chain first noticed my tremor when I was making glasses he noticed head motion in yes motion and hands shaking.this made it harder to make glasses and my performance suffered which resulted in many disciplinary's verbal and written.after about 2 years I finally had enough and filed a disability discrimination lawsuit but did not know the time limits and I was to late.But because of the lawsuit I have been basically been blacklisted in the optical field by this large optical company.So since then I got accepted into the operating engineers. 2 years ago but have noticed that with stress and the cold my tremors have gotten worse even with primidone.my family doctor tripled my dosage of primidone until I can see my neurologist in 2 weeks and she also limited my work abilities to being not able to climb ladders and scaffolding in addition to not running heavy equipment which is a primary job function of a heavy equipment operator.So now don't know what to do .If I should file disability if the neurologist says I cant run heavy equipment any more or at age 47 start all over again trying something different even if my tremors get worse again and I start getting disciplinary's at a new job again?Also I would like to go to a support group but there is none around the Champaign/Urbana ILL area.
What is it like to live with Essential Tremor?
Can you imagine waking in the morning and not be able to hold a cup of coffee in your hands without spilling it, or not able to make your breakfast without making a mess. Then, trying to dress, buttoning your shirt, shaving, and putting on makeup or jewelry is almost impossible for millions.
When you’re out in public having people stare as your hands tremor, head shakes yes or no, and scared to death you might have to sign or fill out a form. Eating is another huge problem, slinging food from forks and spoons trying to make it to your mouth as your hands tremor, and spilling your drink unless it’s in a sippy cup with a lid. Many people with movement disorders voice tremors and communication is difficult. People have lost their job when their boss finds out about their tremors.
Now, how would you like to be a 5 year old in kindergarten and can’t color the page, write your ABC’s like the other kids. How would it feel to be a teenager trying to eat, write, or grasp things in their tremoring hands while others stare, giggle, bully, and tease.
Essential Tremor is the largest movement disorder in the world and is 10 times larger than Parkinson’s. What is Essential Tremor? (ET) is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs, or trunk. Over 10 million Americans, including children, have Essential Tremor. That’s about 5% of all people in the United States. For comparison sake 7.8% of the population have some type of diabetes. Most people though haven’t heard about Essential Tremor and the Diann Shaddox Foundation for Essential Tremor is adamant to bring attention to the world.
First and foremost, Essential Tremor can begin at any age from ages 1 to 100. ET doesn’t discriminate with age, race, sex, or national origin.
The Diann Shaddox Foundation for Essential Tremor is a Non-Profit public organization 501 c(3) giving hope to millions, including children, living with Essential Tremor. Our mission is to increase awareness about people afflicted with Essential Tremor and to find a cure.
Please join the fight and the Diann Shaddox Foundation for Essential Tremor and make a difference. Donate www.diannshaddoxfoundation.org.
Diann Shaddox is Founder of Diann Shaddox Foundation for Essential Tremor. She is an author of ‘A Faded Cottage’ a South Carolina love story about an artist who develops Essential Tremor and she has ET.
I was in my early twenties when life changed for me. My hands began to shake when I’d do tedious work. No one, not even doctors, could figure out what was happening to me and they, the doctors, believed I was nervous and just needed to calm down.
One day when I was standing at the post office window in Louisville, Kentucky changed my world. You see, a simple form containing my name and address I wasn't able to fill out. I could hear the whispers and comments from people standing in line behind me The confused look of the post office worker's face told the entire story. I had been taught not to show my feelings in public, but tears flowed down my face as I raced, clutching my package in my arms, out of the building. That one day, I had to find my answers and I went out on my own to figure out what was happening to me. Without my GP or insurance permission I found a Neurologist and made an appointment. That day in the doctor’s office I finally made the discovery that I had Essential Tremors.
I was relieved to know what I had, but didn't really understand what Essential Tremor was. I thought I was the only person with this problem and didn't bring it up with my friends and family unless someone asked.
Not letting anything deter me, I continued life with the determination that I’d learned from my grandmother. I was unrelenting to do tedious work like counted cross-stitch on linen and playing the piano, even with trembling hands. It was as if my mind would relax letting my hands work without thinking. I learned to hide my hands out in public, to grip my drinking glass with both hands, and how to use my body for cover as much as possible.
Things seemed to be working for many years, but on my birthday, December 18th, 2010 my hands were shaking uncontrollably. 2010 had been a year when many people began to question and stared at me wondering why I was nervous or maybe thinking that I was weird. Being out in public was difficult, the stares were tough, and once more, the simple feat of filling out forms was devastating. Even being in a doctor's office was difficult as nurses questioned why I was so nervous and shaking so much, giving me stares.
That night of December 18th I sat in my office, anger grew watching my hands quiver as they hovered over the keyboard, and for once in my life I felt sorry for myself. The question of why, a question without an answer, played in my mind. Being a writer the words began to flow and Quaid Witherspoon, a famous artist, was born. A man who had everything or so he thought, but now his hands had deserted him and his life of painting had ceased, becoming a bitter man. The story of Quaid Witherspoon, the novel 'A Faded Cottage', became an incredible love story, one about strength of mind to fight fate and never accept what life throws at you.
I found out that I wasn’t alone and millions of people worldwide had Essential Tremor. I began to do book signing and would ask if anyone knew what Essential Tremor was. Again I was shocked that no one knew what ET was even though it is the largest movement disorder 10 times larger than Parkinson’s. It seemed that 99% of the time the answer was no. Many police departments even answered the same.
However, the first of May, my life was jerked to a stop. My healthy young son, who was backing me on my journey, went to the hospital with a headache. We learned he had an aggressive stage 4 cancerous tumor the size of a lemon in his brain. He elected to have surgery, never woke, and died on May 20, 2014.
My life now had changed or maybe seemed to have ended. In June 2014, I sat back and reflected about my journey that had all started with one little book “A Faded Cottage.” How that one night on my birthday writing that book had sent me on a wild journey and I didn’t know if I wanted to continue. I had set out just to write my stories, but my life had turned into a whirlwind and now I had to make a decision.
I don’t give up easy and knew my son would be disappointed if I didn’t continue with the Diann Shaddox Foundation for Essential Tremor. On August 29, 2014 the IRS approved Diann Shaddox Foundation for Essential Tremor.
What is Essential Tremor? (ET) is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs, or trunk. Over 10 million Americans have Essential Tremor, including children, and millions more people worldwide. That’s about 5% of all people in the United States. For comparison sake, 7.8% of the population have some type of diabetes.
Through this process of bringing A Faded Cottage to life I have learned a lot. Finding the ET Facebook groups, talking and listening to everyone’s stories so similar to mine has brought calmness to my life. We have to tell others about ET, so people aren’t sitting alone wondering why this is happening to them.
Even though the stares will forever be, I won’t give up. Now, I’m even more determined the word will spread about Essential Tremor and I’m going to help make it happen. For each book sold of “A Faded Cottage,” proceeds from the sale will go to Diann Shaddox Foundation for Essential Tremor to bring awareness and help find a cure. www.diannshaddoxfoundation.org
Please help me in my journey and join Diann Shaddox Foundation for Essential Tremor and donate to help us raise funds to find a cure for ET. www.diannshaddoxfoundation.org.
No you won’t die from Essential Tremor, you will die with it.
What is essential tremor?
Essential tremor (ET) is when you have uncontrolled shaking movements in parts of your body - most commonly the arms and hands. It tends to occur in families. It is mild in some people but can become severe, debilitating, and demoralizing. First and foremost, Essential Tremor can begin at any age from ages 1 to 100. ET doesn’t discriminate with age, race, sex, or national origin.
What is Essential Tremor? ET is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs, or trunk. Over 10 million Americans, including children, have Essential Tremor. That’s about 5% of all people in the United States. Most people though haven’t heard about Essential Tremor and we have to educate schools, first responders, and even medical personal.
Essential tremor usually starts in one hand or one of your arms. Within 1-2 years, the other hand/arm is likely to be affected and it may spread to involve the legs, head, and voice. It can sometimes become quite severe so that everyday activities such as holding a cup can become difficult. ET isn’t only a social problem it can interfere with all aspects of your life like walking and speech can become difficult when your voice quivers so you have trouble talking. Loss of your abilities is hard to have a purpose in life. The tremor is usually not there at rest but becomes noticeable when the affected body part is held in a position, or with movement. The tremor can be present at all times and may be worse with stress, tiredness, hunger or certain emotions such as anger. Extremes in temperature may also make the tremor more severe.
What causes essential tremor?
Essential tremor is known to run in families. At least 5-7 out of 10 people with essential tremor have other members of the family with the same condition.
Up to 7 in 10 people with essential tremor find that the tremor reduces after drinking some alcohol.
How is essential tremor diagnosed? There is no test to diagnose essential tremor. Your doctor can usually diagnose essential tremor based on your explanation of the tremor and an examination. It is important for the doctor to make sure that there are no other conditions present that are causing tremor. In some cases, this may mean that you need to have some tests to rule out other conditions. For example, blood tests or a brain scan. You may also be referred to a neurologist (a doctor with a special interest and expertise in the brain and nerves).
While the diagnosis of ET remains a visual one, certain brain scans Magnetic Resonance Imaging (MRI) and Computerized Tomography (CT) may be helpful in eliminating any other conditions which also produce tremor as a symptom. For example growths such as tumors or damage to the brain can be seen on certain brain scans. Blood samples may also be taken to rule out thyroid or copper metabolism problems, both of which can cause tremor. DATScan a diagnostic test can distinguish between ET and tremors of Parkinson's disease.
Other conditions that can cause tremor and need to be ruled out include a side effect from some prescribed medicines, anxiety, caffeine, some poisons, kidney, liver disease, thyroid disease, Parkinson's disease and other movement disorders.
What is the treatment for essential tremor? Essential tremor cannot be cured. Treatment may reduce the severity of the tremor. There are various treatments that are used.
Medication There are two medicines used initially for essential tremor - propranolol and primidone. These medicines have been shown to ease the tremor in up to 8 in 10 affected people.
Propranolol - this is a medicine that is usually used in heart disease. It is in a class of medicines called beta-blockers. It has also been shown to be effective in essential tremor. This medicine should be used with care if you have a heart conduction problem or a lung disease such as asthma. The most common side effects with propranolol are dizziness, tiredness, and nausea (feeling sick).
Primidone (Mysoline), - this is a medicine that is primarily used for epilepsy, but it also works very well in essential tremor. The most common side-effects are sleepiness, dizziness and nausea. These may improve if you continue to take this medicine.
OnabotulinumtoxinA (Botox) injections. Botox injections might be useful in treating some types of tremors, especially head and voice tremors. Botox injections can improve tremors for up to three months at a time.
However, if Botox is used to treat hand tremors, it can cause weakness in your fingers. If it's used to treat voice tremors, it can cause a hoarse voice and difficulty swallowing.
When the diagnosis of essential tremor is made, you may be offered one of these medicines. A low dose is usually started at first, and gradually increased until your tremor is eased. If you reach the maximum dose without a satisfactory improvement, then the other medicine can be tried. If that also doesn't work, you can try them together. Other medicines can be tried if these two are not effective. A wide range of medicines have been shown to have some effect on reducing the severity of the tremor.
Surgery If medicine treatment is not effective, and the tremor is severe, then a surgical procedure may be an option. There are two main surgical procedures that may be considered - thalamotomy and thalamic deep brain stimulation. They both involve the thalamus. This is a deep part of the brain that organizes messages travelling between the body and brain. High intensity focused ultrasound waves precisely target a focal point in the Vim nucleus of the thalamus can also be used.
What is Exablate Neuro?
High intensity focused ultrasound waves precisely target a focal point in the Vim nucleus of the thalamus, the tiny part of the brain that is thought to be responsible for causing tremors. The Exablate Neuro ultrasound transducer consists of 1024 beams that generate enough heat to ablate the targeted tissue during treatment. The result is an immediate and significant reduction of tremor for patients.
During planning and treatment for essential tremor, the patient is fully conscious and lying on the treatment bed in an MRI scanner. MRI provides high resolution visualization, patient-specific treatment planning and continuous monitoring of the procedure. Real-time thermal feedback allows the physician to control and adjust the treatment, ensuring that the targeted tissue is completely ablated without impacting adjacent healthy tissue.
This revolutionary, non-invasive treatment offers a life changing treatment to patients with essential tremor.
Difference in focused ultrasound:
MINIMAL HOSPITALIZATION and short recovery time
SHARP, ACCURATE Lesions as small as 2mm, no penetrating trajectories, no implanted hardware, no ionizing radiation, less risk of infection.
REAL TIME MRI guidance for targeting and thermal feedback, with immediate results
Thalamotomy -in this procedure, the thalamus on one side of the brain is destroyed. It has been shown to be very effective. It stops or greatly reduces the tremor in up to 9 out of 10 people with essential tremor. There are risks involved such as a bleed into the brain. Potential side-effects include muscle weakness, speech problems and memory loss. If the thalamus on both sides of the brain is destroyed, there is a higher chance of side effects. This is not usually recommended.
Thalamic deep brain stimulation- this procedure involves placing an electrode (fine wire) into the thalamus on one or both sides of the brain. The electrode is connected to a device called a stimulator. The electrode and stimulator stay in the body. (The stimulator is placed under the skin at the top of the chest.) The simulator sends electrical impulses down the electrode to the thalamus. It is not known exactly why this device works. It seems to interrupt or block the nerve signals coming through the thalamus that cause the tremor. If you have this procedure, you will need to have regular reviews to make sure that the stimulator setting is correct. This aims to minimize side-effects and maximize benefit. It may produce a good response in up to 9 out of 10 affected people. Again, there is a small risk that the procedure may cause a bleed into the brain. Side effects include loss of sensation, speech problems, and weakness. These usually resolve when the stimulator settings are adjusted.
Botulinum toxin injections. There is some evidence that Botox injections are helpful in reducing certain tremors. Unfortunately, a Botox injection into the arm also produces weakness of the arm. This is usually not tolerated. It is mainly useful when essential tremor affects the head and neck.
Alcohol - Many people find that alcohol is helpful in reducing their tremor. It needs to be used with caution to avoid developing an alcohol problem. It is not advisable to drink more than the normal recommended amount of alcohol. That is: men should drink no more than 21 units of alcohol per week, no more than four units in any one day, and have at least two alcohol-free days a week. Women should drink no more than 14 units of alcohol per week, no more than three units in any one day, and have at least two alcohol-free days a week. Pregnant women, and women trying to become pregnant, should not drink alcohol at all. One unit is in about half a pint of normal strength beer, or two thirds of a small glass of wine, or one small pub measure of spirits.
Avoid caffeine. Caffeine and other stimulants can increase tremors
Stress and anxiety Stress and anxiety tend to make tremors worse, and being relaxed may improve tremors.
What is the outlook? Essential tremor is a progressive disease. This means that it tends to gets worse over time. There needs to be more research on the cause to find more medicines that work for ET and to find a cure.
What is it like to live with Essential Tremor?
This past weekend I spent Saturday, January 24th and Sunday January 25th at the Frampton Plantation in Yemassee, South Carolina as a guest of the South Carolina Lowcountry Tourism Commission. I was there to raise money for the Diann Shaddox Foundation.
The "Frampton House" property was part of an original King's Grant to the Frampton family in the 1700s. In 1865, General Sherman's troops burned the plantation house and all the farm buildings that stood on this site. In 1868, John Frampton rebuilt the present charming Lowcountry farmhouse and continued to work the land, which is now the home of the SC Lowcountry Tourism Commission.
Saturday morning began rainy and windy with the ground saturated from the storms the night before. I arrived around 9:00 that wet morning to find beige A frame canvas tents dotting the grounds of the old plantation where Union and Confederate soldiers had spent the night. 19th-century cannons made by Lt. Colonel Vernon Terry were placed in front of the old plantation home.
As the morning moved on the rain clouds seemed to be racing across the sky as the warmth of the South Carolina sun began to shine down upon the Plantation. For me though, since my tremors go wild in cold and I couldn't seem to have enough layers of clothes on I sat quivering from Essential Tremor and the cold. The plantation home became busy with soldiers and visitors scurrying and preparing for the Battle of Pocotaligo to take place later that day.
Members of the Sons of Confederate Veterans: Charles Jones Colcock Camp 2100 and the 144th New York State Volunteers, whose ancestors fought at the 1864 Battle of Honey Hill In Ridgeland, SC were present to represent Union and Confederate soldiers at the Battle of Pocotaligo reenactment.
In the quietness of the afternoon The Battle of Pocotaligo began with the firing of the cannons echoing across the valley shaking and rattling the old plantation home. The original Battle of Pocotaligo was fought on May 29, 1862 near Yemassee, SC. The Unions objective was to sever the Charleston and Savannah Railroad to isolate Charleston. During that battle, the Union lost 2 & 9 wounded, and the Confederates lost 2 & 6 wounded. The second Battle of Pocotaligo was on October 22, 1862 and once more, the objective was to sever the railroad. In both battles, the Confederate soldiers were able to keep the Union soldiers from the railroad.
Sunday was a picture perfect day that started out cool but warmed into the high 50’s. Each day I was able to meet and talk with so many people to explain about the Diann Shaddox Foundation’s mission to bring awareness for Essential Tremor, the largest movement disorder. I was able to meet Ann, James, Pat, Claudia, Brittany, Bob Rogers, Lt. Colonial Vernon Terry, and so many others.
Not only did I get to enlighten so many about Essential Tremor, I also learned so much about history. I was very pleased that so many young people were there and interested in talking to historians. To witness how people lived sleeping in tents and their entertainment, (not the computer or cell phones) listening to guitar playing and singing at night by a campfire, and reading books or telling stories by the light of oil lamps was wonderful. It was a couple of fascinating days.
To learn more about the reenactments go to: Sons of Confederate Veterans: Charles Jones Colcock Camp 2100 https://www.facebook.com/pages/Sons-of-Confederate-Veterans-Charles-Jones-Colcock-Camp-2100/462176950559213?fref=photo & 144th New York State Volunteers,
Cracking The Brain's Genetic Code
The Huffington Post | By Carolyn Gregoire
Posted: 01/23/2015 8:10 am EST Updated: 01/23/2015 9:59 am EST
An international team of over 300 scientists are taking on an ambitious project to identify eight common genetic mutations that appear to age the brain by three years on average. The team, known as Enhancing Neuro Imaging Genetics through Meta Analysis (ENIGMA) Network, hopes to pave the way for new treatments for Alzheimer's, autism and other neurological disorders.
Led by researchers at the University of Southern California, neuroscientists from more than 190 scientific institutions are bringing together a wealth of data, including brain scans and genetic data from 33 countries around the globe to identify and target genes that either enhance or deteriorate key brain regions.
"The ENIGMA Center's work uses vast datasets as engines of biomedical discovery; it shows how each individual's genetic blueprint shapes the human brain," Dr. Philip Bourne, associate director for data science at the National Institutes of Health, said in a statement.
Using MRI data from more than 30,000 people, the researchers screened millions of genome variations to determine which ones affected important brain areas implicated in common neurological disorders.
They discovered eight genes that are capable of either eroding or strengthening brain tissue, which may alter the "brain reserve" by two to three percent. In this respect, the genes seem to exert an effect on how resilient our brains are to disease.
"We have some preliminary data that shows the genes driving brain size may affect disease risk," Dr. Paul Thompson, ENIGMA's principal investigator, said in an email to the Huffington Post. "Some affect the memory systems of the brain that decline in Alzheimer's disease. Other genes affect deep brain nuclei that degenerate in Parkinson's and Huntington's disease. If you think of the brain as a mental bank account, we need to know what depletes it and tops it up."
The findings could help to devise future treatments for neurological disorders using pharmacogenomics, which uses an individual's genetic makeup to determine treatment response and created more tailored interventions.
"If an existing treatment were more effective for certain people, or only in certain people, ENIGMA would help to personalize medicine," Thompson explains. "The pain killer codeine, for example, is thought to be less effective in people with certain genetic codes. Imagine if that was true for psychiatric medications too -- it may be, and ENIGMA may offer one way to find out."
The project, which is the largest of its kind, was made possible through a $23 million grant from the National Institutes of Health as part of its Big Data Initiative to improve biomedical data.
It's a powerful testament to the kind of impact that global data collection and scientific collaboration can have.
"I love this kind of work -- it pays off financially, as people share resources and skills, and it gives us a power we never had in neuroscience," said Thompson. "It is not just data. It's also people in 33 countries working together to crack the brain's genetic code. Having 300 of the world's greatest minds attack the same problem reminds us of the allied code-breaking effort in World War II."
The findings were published in the journal Nature.
Cracking The Brain's Genetic Code http://www.huffingtonpost.com/2015/01/23/largest-study-of-its-kind_n_6523868.html?ir=Healthy+Living&ncid=fcbklnkushpmg00000030
Billy Williams: First Patient Treated with Focused Ultrasound for Essential Tremor For more than a decade, Billy R. Williams of Fort Valley, Virginia, struggled with essential tremor, a progressive and debilitating neurological disorder. Medications controlled his tremor for a while, but eventually the shaking became so severe that Williams found it impossible to do anything with his dominant right hand.
Billy Williams: First Patient Treated with Focused Ultrasound for Essential Tremor
Published on Aug 12, 2013
For more than a decade, Billy R. Williams of Fort Valley, Virginia, struggled with essential tremor, a progressive and debilitating neurological disorder. Medications controlled his tremor for a while, but eventually the shaking became so severe that Williams found it impossible to do anything with his dominant right hand.
The Brain’s Balancing Act Researchers discover how neurons equalize between excitation and inhibition
The Brain’s Balancing Act Researchers discover how neurons equalize between excitation and inhibition
Researchers at the University of California, San Diego School of Medicine have discovered a fundamental mechanism by which the brain maintains its internal balance. The mechanism, described in the June 22 advanced online publication of the journal Nature, involves the brain's most basic inner wiring and the processes that control whether a neuron relays information to other neurons or suppresses the transmission of information.
Specifically, the scientists have shown that there is a constant ratio between the total amount of pro-firing stimulation that a neuron receives from the hundreds or thousands of excitatory neurons that feed into it, and the total amount of red-light stop signaling that it receives from the equally numerous inhibitory neurons.
This constant ratio, called the E/I ratio, was known to exist for individual neurons at a given time. This study goes a step further and shows that the E/I ratio is constant across multiple neurons in the cortex of mice and likely also humans, since the fundamental architecture of mammalian brains is highly conserved across species.
“Neurons in our brain drive by pushing the brake and the accelerator at the same time,” said Massimo Scanziani, PhD, professor of neurosciences, Howard Hughes Medical Institute investigator and co-author. “This means that there is no stimulus that you can apply that will activate purely excitatory neurons or purely inhibitory ones.”
“There is always a tug-of-war. It’s weird but very clever. It allows the brain to exert very subtle control on our response to stimuli.” For example, Scanziani said it prevents both runaway neuronal firing (excitation) and permanent quiescence (inhibition) because excitation and inhibition are always coupled.
In experiments, the scientists also showed how the brain maintains a constant E/I ratio across neurons: The adjustment is carried out by the inhibitory neurons through the appropriate strengthening or weakening of inhibitory synapses. A synapse is the gap or juncture between two neurons and synaptic strength refers to the degree to which a passed signal is amplified in the juncture.
“Our study shows that the inhibitory neurons are the master regulators that contact hundreds or thousands of cells and make sure that the inhibitory synapses at each of these contacts is matched to the different amounts of excitation that these cells are receiving,” Scanziani explained. If, for example, the level of excitatory stimulation that a nerve cell is receiving is doubled, the inhibitory synapses over a period of a few days will also double their strength.
In terms of clinical applications, the scientists said that neurological diseases such as autism, epilepsy and schizophrenia are believed to be a problem, at least in part, of the brain’s ability to maintain an optimal E/I ratio.
“If this E/I balance is broken, it completely alters your perception of the world,” Scanziani said. “You will be less able to adjust and adapt appropriately to the range of stimulation in a normal day without being overwhelmed or completely oblivious, and E/I imbalances may be most easily noticed in social interactions because these interactions require such nuance and subtle adjusting.”
Scientists have also proposed that some neurodegenerative diseases, such as Parkinson’s and Huntington’s disease, may be associated with a shift in the E/I balance.
Minghan Xue, a postdoctoral researcher in neurobiology and the study's lead author, said “now that we know how this E/I balance is regulated in a normal brain, we can begin to understand what goes wrong in the diseased state. It paves the way for interventions that might restore the balance in the brain.”
Co-authors include Bassam Atallah, PhD, Champalimaud Neuroscience Programme, Chamaplimaud Centre for the Unknown, Portugal.
Funding for this study came, in part, from the Jane Coffin Childs Memorial Fund for Medical Research and the Gatsby Foundation.
Media contact: Scott LaFee, 619-543-6163, email@example.com
No you won’t die from Essential Tremor, you will die with Essential Tremor.
There are many misconceptions and people believe that Essential Tremor, (ET) is just a slight tremor in the hands of old people, that’s not true. First and foremost, Essential Tremor can begin at any age, from ages 1 to 100. ET doesn't discriminate with age, race, sex, or national origin.
I’m sure you are wondering, like most people, what is Essential Tremor.
Have you ever heard of ET? 99% of the time the answer is no. Many police departments answer the same even though Essential Tremor is the largest and most common movement disorder in the world 10 times larger than Parkinson’s. What is Essential Tremor? (ET) is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs, or trunk. Over 10 million Americans have Essential Tremor, including children and millions more people worldwide. That’s about 5% of all people in the United States. For comparison sake, 7.8% of the population have some type of diabetes. Most people though haven’t heard about Essential Tremor.
Essential Tremor can be inherited. *
Here are a few things people living with Essential Tremor deal with. Essential Tremor won’t kill you, but…
No you won’t die from Essential Tremor, you will die with it.
The quality of life for someone with a movement disorder can be devastating and depression can set in and you wonder is life worth living. Many people hide in their homes not wanting to face the public with the stares and cruel remarks. Numerous people not only lose the quality of life, but they lose their independence of life.
There are many stages of Essential Tremor, mild to severe tremors, and the progression will vary, but the outcome is the same; some part of their body tremors.
That is why the Diann Shaddox Foundation for Essential Tremor is adamant to find a cause and cure for Essential Tremor. Please join us and help millions around the world living with Essential Tremor. We can make a difference, but we need your help, donate now.
*(The inherited variety of essential tremor is an autosomal dominant disorder. A defective gene from just one parent is needed to pass on the condition.If you have a parent with a genetic mutation for essential tremor, you have a 50 percent chance of developing the disorder yourself. Mayo Clinic)
Please go to www.diannshaddoxfoundation.org to learn more.
The Things of Life
Familial or Essential Tremors: You Are Not Alone
by Nancy Carol Brown Hardin
I don't dare carry a cup of coffee from the kitchen to my computer desk. It's impossible for me to take photographs with any kind of camera. Turning the pages of a book is difficult and sometimes I turn two or three. When I eat, it's almost like playing a game of "catch the fork," or the other fun game of "How much of this food can I wear?" I'm no longer able to hand write anything, and barely able to sign "Love, Mom" or "Love, Granny" to birthday and Christmas cards. I use a label program on my computer for addressing envelopes. As for other relatives or friends, they get cards from me only online.
I'm Sure You're Wondering....
If you're wondering "What on earth is this woman talking about?" here's the answer. I have a condition that is known as Familial Tremors orEssential Tremors. My family knows this, but few of my online writing colleagues do, so this may be a revelation to some.
I've Lived With This For Years
That's right, it's nothing new for me. I've had this condtion for several years, but it's worsened as I've aged. Oddly enough, it seems to affect my right hand more than my left, and since I'm right handed that's not a good thing. In my young years, I was able to partially control it or mask it, but now that's no longer possible. The simple task of bringing a cup of coffee with me to my office is a cautious task at best, and a total mess at worst. Some days I can manage to actually have coffee in my cup when I get to my desk. HA! But the solution of course, is to use acovered carafe, or a thermal cup with a no leak top. I prefer the cup, because the coffee stays hot longer.
There Are Medications For Tremor
A few years back my doctor put me on a medication originally designed to help with convulsions, but which is also used to aid the lessening of tremors. After about a year, the strength of the dosage was increased. This medication is only taken at night when I'm going to bed, because it does tend to put me to sleep. It has an accumulative effect, providing better results over a regular period of taking the drug. However, there are those who prefer not to take a medication for the problem.
Other Diseases and Conditions That Mimic
If I miss my meds for any reason, and I do my best not to, my entire body shakes as though I have what the old folks in my childhood home called "St. Vitus Dance," which is actually Sydenham's Chorea, another movement disorder. As far as I know, there has never been a connection between the two. Parkinson's Disease, is another ailment that causes uncontrollable movement, caused by a degenerative disorder of the central nervous system. Again, there has never been a connection between Parkinson's and Familial or Essential Tremors.
Why Is This Called "Familial" or Essential Tremors?
These tremors are often referred to as Familial or Essential Tremors because they usually run in families. It's thought to be a genetic mutation and is dominant, meaning if only one of the parents has it, the children are more likely to have it. I can remember my mother as she aged, and I watched her hands shaking. I didn't realize it wasn't due to her age, but to this disorder. Now I see the signs of tremor in two of my children, a son and a daughter. They didn't show the symptoms when they were little, but developed them in their young adult years, just as I have. I'm sure as they grow older, they will have the same problems I do. There are young children who have Essential Tremor, and you can find more about it at the links I've provided below.
The Hidden Dangers of Medical Scans Medical imaging tests
The Hidden Dangers of Medical Scans Medical imaging tests are exposing more of us to potentially cancer-causing radiation. Here's when you really need that scan and when you should just say no Over the past ten years, Jill Nelson, 52, a health coach, personal trainer and counselor in Chicago, has received at least seven computed tomography (CT) scans and close to 30 sets of X-rays for a variety of health ailments—from two separate disk fusions in her spine to a worrisome-looking spot on her lung. That’s on top of the 10 or so mammograms she has had since age 35, plus dozens of dental X-rays. “With all that radiation, I’m surprised I don’t glow,” she says. “It makes me a little uneasy—in trying to get my health problems diagnosed, did I increase my risk of cancer?”
Jill’s concern is shared by a growing number of doctors and medical organizations, who are worried about the soaring use of medical imaging tests that rely on ionizing radiation. This radiation can damage your cells’ DNA, which may, over time, lead to cancer. The more you’re exposed to, the riskier it is. And thanks to the increase in CT scans—which typically emit far higher doses of radiation than traditional X-rays or even other imaging tests like mammograms—exposure has risen dramatically. In 1980, only about 3 million CT scans were performed in the United States. By 2013, that number had skyrocketed to 76 million.
Exactly how dangerous are all those zaps? In 2009, National Cancer Institute researchers estimated that the 72 million CT scansperformed in 2007 could lead to as many as 29,000 future cases of cancer. And a couple of years ago, when the Institute of Medicine looked broadly at the environmental causes of breast cancer, it concluded that one factor that’s strongly associated with risk of developing the disease is ionizing radiation.
That sounds scary—and it is. “Limiting exposure to medical radiation should be on every woman’s cancer-prevention list,” says Rebecca Smith-Bindman, MD, professor of radiology, epidemiology, biostatistics and health policy at the University of California, San Francisco. Yet the tests are widely overused, research finds. “About a third of CT scans are clinically unnecessary or could be avoided by using conventional X-rays or an imaging test that doesn’t use radiation, like ultrasound or MRI,” says David J. Brenner, PhD, director of the Center for Radiological Research at Columbia University Medical Center.
The challenge is figuring out whether the CT your doctor wants you to have is essential or not—a judgment call that is difficult for the average person to make. CT scans can, in fact, be lifesaving. “They’ve revolutionized medicine in almost every area you can imagine, including helping prevent unnecessary exploratory surgeries and diagnosing and treating cancers, heart disease and stroke, ” Brenner says. Price and time can also be a factor since CT scans are cheaper and faster than an MRI. (For a cost comparison of common imaging tests, go to health.com/scan-costs.)
Understanding the risks of medical radiation—as well as the real benefits—will better prepare you to make the best decision no matter when you’re faced with it. Here’s what you must know to avoid unneeded radiation.
When you receive a traditional X-ray, a small amount of radiation passes through your tissues in order to create a two-dimensional image of your insides in shades of gray. Air is black because it doesn’t absorb any X-rays, while bones are white because they absorb a lot, and organs are somewhere in between.
CT scanners, on the other hand, rotate around the body, sending numerous X-ray beams (and multiple times the amount of radiation) from a variety of angles. A computer processes the data to create three-dimensional pictures, providing a far more detailed view. “CTs allow us to see behind and around structures in the body in three dimensions with exquisite resolution,” Brenner says. As a result, they’re an indispensable tool in diagnosing all sorts of frightening health problems, such as finding small, early cancers (particularly in the lungs, liver and kidneys) or spotting internal injuries after a serious accident.
“They can detect differences between normal and abnormal tissue about 1,000 times better than a traditional X-ray,” says Richard Morin, PhD, professor of radiologic physics at the Mayo Clinic in Jacksonville, Fla. “Before CTs, if we suspected cancer in the abdomen or internal organs, we had to cut the patient open and do exploratory surgery, which could mean a weeks-long hospital stay. Now with a single scan we can confidently make the call in minutes, and the patient walks out the door afterward. If it’s an appropriately ordered exam, the benefit is far, far greater than any radiation risk.”
But the ease and accuracy of CTs has also fueled an alarming level of overuse. Have a headache that prompts a trip to the ER? Odds are good you’ll get a CT, even though current guidelines say that doctors shouldn’t perform imaging tests on patients with migraines or chronic headaches. Brain scans, whether a CT or an MRI, are worthwhile only if you have a headache with other worrisome symptoms, such as weakness or numbness on one side of your body, explains Brian Callaghan, MD, a neurologist at the University of Michigan. Even so, he and his colleagues recently found that about one in eight headache-related doctor visits result in a brain scan—and nearly half those patients are getting CTs, even though MRIs are more effective for peering into the brain.
“The goal isn’t to eliminate CTs but to use them more prudently,” Dr. Smith-Bindman says. “When my son did a head-dive out of a tree and was vomiting afterward, the ER doc recommended a CT scan to rule out a brain bleed, and I was happy to have the test. Five years later, when he hit his head skiing, it was pretty clear he just had a concussion, and the ER doc didn’t think a CT was necessary, so we didn’t get it. Doctors and patients need to step back a little and say, ‘Yes, this is a great test, but is it really necessary?’ If you have a CT when it’s not necessary, it won’t do any good—which means it can only do harm.”
X-rays and CT scans use so-called ionizing radiation, which contains enough energy to penetrate the body—and can damage DNA in your cells. Any damage that isn’t repaired can lead to DNA mutations, and those glitches in a cell’s programming center can, over many years, lead to cancer.
And we know that it does. “There’s not a single cancer-causing agent that has been studied more thoroughly than ionizing radiation,” Dr. Smith-Bindman says. Survivors of the atomic bombs in Hiroshima and Nagasaki who were exposed to even very low doses were more likely to get practically every type of cancer, from leukemia to lung cancer. Nursing mothers who were treated with radiation for breast infections—a common practice in the 1920s and ’30s—developed breast cancer at higher rates than those who weren’t. Those of us who’ve had more sunburns (caused by the sun’s ultraviolet radiation) are at higher risk of getting skin cancer. And the newest studies reveal that children who undergo CT scans of the head, abdomen or chest are more likely to develop brain cancer and leukemia over the next 10 years.
For reasons that are unclear, women seem to be slightly more sensitive to radiation than men. Children are more vulnerable than adults; not only do their growing bodies and rapidly multiplying cells put them at a higher risk, they also have far more years ahead of them during which they could develop cancer.
However, it’s important to note that our bodies are able to repair damage done to our cells by low levels of radiation. “If they weren’t, everyone who goes out in the sun would get skin cancer,” points out James Brink, MD, radiologist in chief at Massachusetts General Hospital.
The poison is in the dose, says John Boice, ScD, president of the National Council on Radiation Protection and Measurements and professor of medicine at Vanderbilt University. And the effects of exposure might be cumulative. “What may happen is that our bodies repair damage from small doses, but at higher doses our repair mechanisms are overwhelmed,” Dr. Brink explains. “And after that, subsequent exposure to radiation may propel the damaged cells farther down the path toward cancer.”
The actual danger to an individual receiving a scan (or even two or three) is relatively low. The overall risk of the average woman getting cancer at some point in her lifetime is about 38 percent; getting a single CT scan raises that risk to perhaps 38.001 percent, Boice explains. But since no one knows who is most likely to be affected, there is an element of radiation roulette at play.
What’s more, we’re marinating in low-level radiation every day. The average person in the United States receives about 3 millisieverts (mSv) of radiation per year (more if you live at a high altitude) from the sun and naturally occurring radiation in the environment, such as radon gas. To put medical radiation in that context, a dental X-ray is equivalent to about one day of natural radiation, while a single chest X-ray is equivalent to about 10 days. A mammogram adds up to about seven weeks of natural radiation—but even that level, doctors say, poses a relatively small risk, especially when compared with the danger of missing a malignant tumor already growing in your breast. A regular-dose chest CT, on the other hand, exposes you to about twoyears’ worth of natural background radiation, or 7 mSv. Some of the Japanese survivors of atomic bombs were probably exposed to between 5 and 20 mSv on the low end. The trouble is, we don’t fully know how much our bodies can handle.
The issue of medical radiation is now on most physicians’ and medical societies’ radars; just this fall, the American Heart Association called for doctors to learn about, and discuss with patients, the risks of radiation exposure from cardiovascular imaging tests. So it’s surprising—and concerning—how spotty regulations still are. For instance, dosages aren’t standardized across imaging centers, which means that one hospital or clinic may be delivering up to 50 times as much radiation as another facility, according to Dr. Smith-Bindman. “If machines are set too low, they provide blurry, unusable images, but the vast majority are set higher than they need to be,” she says. This is in part because it’s not a simple matter of pressing one button and lowering the dose. “There are formulas you need to use to set up a new protocol,” Dr. Smith-Bindman explains.
And because most older machines, many of which are still in use, don’t have warning systems to alert technologists when radiation levels are set too high, mistakes can happen. The most publicized CT-related overdoses occurred between 2008 and 2010, when several hospitals in California and one in Alabama seriously over-radiated more than 400 patients. The problem was discovered after patients reported losing their hair. Since then, new technology has been created to alert technologists if the dose is too high—and new federal legislation is in the works that would require radiology centers to adopt modern imaging equipment standards by 2016.
Still, the more common problem is that too many scans are being done in the first place, particularly in the ER, where doctors sometimes order CTs before they’ve fully evaluated a patient, Dr. Smith-Bindman says. But doctors in general have come to rely heavily on these tests. One reason: Many MDs today have a lower tolerance for ambiguity than ever before and have learned to trust images to give them definitive answers, even when other methods, including a risk-free physical exam, can provide the information needed.
In addition, physicians in private practice may feel financial pressure to recoup the cost of expensive equipment. “Research has found that if a neurologist, say, owns a CT scanner, the percentage of patients getting scans is higher than what’s typically done in a radiology clinic and much higher than in similar doctors’ practices without scanners,” Morin says. Add to the mix the possibility of being sued over a misdiagnosis, and you have a recipe for overuse.
Avoiding unnecessary medical radiation starts with speaking up and being your own best advocate (see 5 Questions to Ask Before You Have That Scan, page 117). At the same time, multiple industry efforts are under way to lower exposures from CTs. One initiative, Choosing Wisely (choosingwisely.org), helps doctors and patients understand which procedures and tests—including imaging tests—are unnecessary or commonly overused. Radiologists are leading the charge to make scans safer: Image Wisely, a program created by the American College of Radiology (ACR) and the Radiological Society of North America, is focused on optimizing the amount of radiation used in imaging studies and eliminating inessential CTs and other scans. The ACR has also created the Dose Index Registry in an effort to compare dosage information across facilities. About a third of the 3,000 or so scanning facilities in the U.S. are members, which means they get updates on the dosages other centers are using for similar tests, explains Morin, who was the founding chair of the registry. (For more on finding the best place to get a scan, go tohealth.com/safe-scan.)
Meanwhile, companies that manufacture scanners are developing new technology to lower the radiation doses. “They’ve fine-tuned the equipment so you can produce high-quality images with lower doses,” Morin says. Even so, when you need to get a CT scan, it’s always a good idea to ask if they can scan using the lowest dose possible, Dr. Smith-Bindman says. If you’re smaller or thinner, technicians can often get a clear image at a lower dose. (The bigger your body, the more radiation you require, since fat absorbs some of the beams.) Avoid unnecessary radiation from even low-level sources, like dental X-rays, which you probably don’t need every year unless you have ongoing problems with tooth decay.
The idea is not to refuse all medical radiation but to do your best to discriminate between what’s essential and what’s not. “I always tell my friends to say to their doctors who recommend CTs, ‘I’m happy to have the test, but I’d like you to help me understand why I really need it,'” Dr. Smith-Bindman says. “Medicine often doesn’t change until patients start asking questions. And when it comes to medical radiation, it’s time to start asking.”
1. “Will the outcome of the test change the treatment I’m likely to receive?” If the answer is no, the test may not be necessary, Dr. Smith-Bindman points out.
2. “Are there alternatives without radiation, like ultrasound or MRI?” In some cases, such as many abdominal CT scans, other scans work as well or better, Dr. Smith-Bindman says.
3. If you’ve just had a scan at another facility, ask, “Is there a reason to repeat the scan I just had?” Notes John Boice, ScD: “It doesn’t make sense to do tests twice, yet it does happen.”
4. If a CT scan is crucial, ask, “Is there a way to minimize the dose?” Doctors may be able to use a lower-dose technique, particularly if you’re petite.
5. After a CT scan, ask, “How much radiation was I exposed to?” Write it down so you have a record.
You probably don’t need a CT for… Question your doc if she recommends a CT for these health problems.
Concussion: Concussions can be diagnosed by symptoms alone. But it’s valid to do a CT if the doctor suspects a skull fracture or brain bleed, says Robert Cantu, MD, clinical professor of neurosurgery at Boston University School of Medicine.
Sinus infection: This everyday health problem can generally be diagnosed through symptoms and a physical exam, says the American Academy of Allergy, Asthma & Immunology.
Headache: If you do need a scan, MRI is the test of choice, unless a doctor suspects a stroke or brain hemorrhage, according to the American Headache Society.
Appendicitis in children: It’s best to use ultrasound first, then follow up with a CT if the ultrasound is inconclusive, according to the American College of Radiology.
Back pain: Most cases improve on their own within a month, so it doesn’t make sense to expose yourself to unnecessary radiation. If the pain continues, ask your doctor about an MRI.
How much radiation you get from…
Airport backscatter scan: .0001 mSv
Bone-density scan: 0.001 mSv
Dental posterior bite-wing X-ray series (two to four images): 0.005 to 0.055 mSv*
Two days in Denver: 0.006 mSv
Panoramic dental X-rays (standard single image): 0.009 to 0.024 mSv*
Cross-country flight: 0.04 mSv
Single chest X-ray: 0.1 mSv
Digital mammogram: 0.4 mSv
Average yearly dose from the sun and other environmental sources:3 mSv
Chest CT: 7 mSv
Virtual (CT) colonoscopy: 10 mSv
PET/CT (often used to diagnose cancer): 25 mSv
Smoking a pack a day for a year: 53 mSv
*Dose can vary based on the type of machine used.
Researchers in Toronto have recently shown that taking antioxidants before a scan can reduce the number of DNA breaks caused by the radiation. Published results are expected within the next six months. Says researcher Kieran Murphy, MD, professor of radiology at the University Health Network Toronto: “In light of what we’ve found, making sure you have a diet rich in antioxidant-packed fruits and vegetables could be beneficial.”
Exercise can benefit Essential Tremor, Dystonia & Parkinson's.
Every Victory Counts: Exercise and Parkinson's (Part 2 of 12)
Davis Phinney Foundation
Uploaded on Mar 23, 2011
What are the benefits of exercise for people with Parkinson's disease?
What are stem cells?
Stem cells are the body's raw materials — cells from which all other cells with specialized functions are generated. Under the right conditions in the body or a laboratory, stem cells divide to form more cells called daughter cells.
These daughter cells either become new stem cells (self-renewal) or become specialized cells (differentiation) with a more specific function, such as blood cells, brain cells, heart muscle or bone. No other cell in the body has the natural ability to generate new cell types.
Stem cells have the remarkable potential to develop into many different cell types in the body during early life and growth. In addition, in many tissues they serve as a sort of internal repair system, dividing essentially without limit to replenish other cells as long as the person or animal is still alive. When a stem cell divides, each new cell has the potential either to remain a stem cell or become another type of cell with a more specialized function, such as a muscle cell, a red blood cell, or a brain cell.
Stem cells are distinguished from other cell types by two important characteristics. First, they are unspecialized cells capable of renewing themselves through cell division, sometimes after long periods of inactivity. Second, under certain physiologic or experimental conditions, they can be induced to become tissue- or organ-specific cells with special functions. In some organs, such as the gut and bone marrow, stem cells regularly divide to repair and replace worn out or damaged tissues. In other organs, however, such as the pancreas and the heart, stem cells only divide under special conditions.
“Durham, NC (PRWEB) December 05, 2014
Scientists have for the first time used adult human stem cells to “cure” rats with Parkinson’s disease, a neurodegenerative illness that currently has no cure. The study, published in the current issue of STEM CELLS Translational Medicine, details how a team of researchers working in Germany at the University of Bielefeld (UB) and Dresden University of Technology were able to produce mature neurons using inferior turbinate stem cells (ITSCs).
ITSCs are stem cells taken from tissue that would generally be discarded after an adult patient undergoes sinus surgery.
The team then tested how the ITSCs would behave when transplanted into a group of rats with Parkinson’s disease. Prior to transplantation, the animals showed severe motor and behavioral deficiencies. However, 12 weeks after receiving the ITSCs, the cells had migrated into the animals’ brains and functional ability was not only fully restored, but significant behavioral recovery was witnessed, too. In another positive sign, no tumors were found in any of the animals after the transplantations, something that also has been a concern in stem cell therapy.Due to their easy accessibility and the resulting possibility of an autologous transplantation approach, ITSCs represent a promising cell source for regenerative medicine,” said UB’s Barbara Kaltschmidt, Ph.D., who led the study along with Alexander Storch, M.D., and Christiana Ossig, M.D., both of Dresden University. “The lack of ethical concerns associated with human embryonic stem cells is a plus, too.”
“In contrast to fighting the symptoms of Parkinson’s disease with medications and devices, this research is focused on restoring the dopamine-producing brain cells that are lost during the disease,” said Anthony Atala, M.D., Editor-in-Chief of STEM CELLS Translational Medicine and director of the Wake Forest Institute for Regenerative Medicine. "These cells are easy to access and isolate from nasal tissue, even in older patients, which adds to their attraction as a potential therapeutic tool.”
What are stem cells? Stem cells are a renewable source of tissue that can be coaxed to become different cell types of the body. The best-known examples are the embryonic stem (ES) cells found within an early-stage embryo. These cells can generate all the major cell types of the body (they are “pluripotent”). Stem cells have also been isolated from various other tissues, including bone marrow, muscle, heart, gut and even the brain. These “adult” stem cells help with maintenance and repair by becoming specialized cells types of the tissue or organ where they originate. For example, special stem cells in the bone marrow give rise to all the various types of blood cells (similar blood cell-forming stem cells have also been isolated from umbilical cord blood).
Adult vs. embryonic stem cells Because adult stem cells become more committed to a particular tissue type during development, unlike embryonic stem cells, they appear to only develop into a limited number of cell types (they are “multipotent”).
What are induced pluripotent stem cells? In addition to ES cells, induced pluripotent stem (iPS) cells, discovered in 2007, represent an important development in stem cell research to treat diseases like Parkinson’s disease. Essentially, iPS cells are ”man-made” stem cells that share ES cells' ability to become other cell types. IPS cells are created when scientists convert or "reprogram" a mature cell, such as a skin cell, into an embryonic-like state. These cells may have potential both for cell replacement treatment approaches in patients and as disease models that scientists could use in screening new drugs.
IPS cell technology is somewhat related to a previous method called somatic cell nuclear transfer (SCNT) or “therapeutic cloning” (the technology that gave us Dolly the Sheep). Unlike the iPS cell approach, which converts adult cells directly into stem cells, SCNT involves transferring the genetic material of an adult cell into an unfertilized human egg cell, allowing the egg cell to form an early-stage embryo and then collecting its ES cells (which are now genetic “clones” of the person who donated the adult cell). To date, however, this has not been successfully demonstrated with human cells and iPS cell methods may be replacing SCNT as a more viable option.
A potentially exciting use for iPS cells is the development of cell models of Parkinson’s disease. In theory, scientists could use cells from people living with Parkinson’s disease to create iPS cell models of the disease that have the same intrinsic cellular machinery of a Parkinson’s patient. Researchers could use these cell models to evaluate genetic and environmental factors implicated in Parkinson’s disease.
Stem cells: What they are and what they do. Stem cells and derived products offer great promise for new medical treatments. Learn about stem cell types, current and possible uses, ethical issues, and the state of research and practice.
By Mayo Clinic Staff
You've heard about stem cells in the news, and perhaps you've wondered if they might help you or a loved one with a serious disease. You may wonder what stem cells are, how they're being used to treat disease and injury, and why they're the subject of such vigorous debate.
Here are some answers to frequently asked questions about stem cells.
Why is there such an interest in stem cells?
Researchers and doctors hope stem cell studies can help to:
What are stem cells?
Stem cells are the body's raw materials — cells from which all other cells with specialized functions are generated. Under the right conditions in the body or a laboratory, stem cells divide to form more cells called daughter cells.
These daughter cells either become new stem cells (self-renewal) or become specialized cells (differentiation) with a more specific function, such as blood cells, brain cells, heart muscle or bone. No other cell in the body has the natural ability to generate new cell types.
Where do stem cells come from?
Researchers have discovered several sources of stem cells:
Embryonic stem cells are obtained from early-stage embryos — a group of cells that forms when a woman's egg is fertilized with a man's sperm in an in vitro fertilization clinic. Because human embryonic stem cells are extracted from human embryos, several questions and issues have been raised about the ethics of embryonic stem cell research.
The National Institutes of Health created guidelines for human stem cell research in 2009. Guidelines included defining embryonic stem cells and how they may be used in research and donation guidelines for embryonic stem cells. Also, guidelines stated embryonic stem cells may only be used from embryos created by in vitro fertilization when the embryo is no longer needed.
Where do these embryos come from?
The embryos being used in embryonic stem cell research come from eggs that were fertilized at in vitro fertilization clinics but never implanted in a woman's uterus. The stem cells are donated with informed consent from donors. The stem cells can live and grow in special solutions in test tubes or petri dishes in laboratories.
Why can't researchers use adult stem cells instead?
Although research into adult stem cells is promising, adult stem cells may not be as versatile and durable as are embryonic stem cells. Adult stem cells may not be able to be manipulated to produce all cell types, which limits how adult stem cells can be used to treat diseases.
Adult stem cells also are more likely to contain abnormalities due to environmental hazards, such as toxins, or from errors acquired by the cells during replication. However, researchers have found that adult stem cells are more adaptable than was initially suspected.
What are stem cell lines and why do researchers want to use them?
A stem cell line is a group of cells that all descend from a single original stem cell and is grown in a lab. Cells in a stem cell line keep growing but don't differentiate into specialized cells. Ideally, they remain free of genetic defects and continue to create more stem cells. Clusters of cells can be taken from a stem cell line and frozen for storage or shared with other researchers.
What is stem cell therapy (regenerative medicine), and how does it work?
Stem cell therapy, also known as regenerative medicine, promotes the reparative response of diseased, dysfunctional or injured tissue using stem cells or their derivatives. It is the next chapter of organ transplantation and uses cells instead of donor organs, which are limited in supply.
Researchers grow stem cells in a lab. These stem cells are manipulated to specialize into specific types of cells, such as heart muscle cells, blood cells or nerve cells.
The specialized cells can then be implanted into a person. For example, if the person has heart disease, the cells could be injected into the heart muscle. The healthy transplanted heart cells could then contribute to repairing defective heart muscle.
Researchers have already shown that adult bone marrow cells guided to become heart-like cells can repair heart tissue in people, and more research is ongoing.
Have stem cells already been used to treat diseases?
Yes, doctors have performed stem cell transplants, also known as bone marrow transplants. In stem cell transplants, stem cells replace cells damaged by chemotherapy or disease or as a way for the donor's immune system to fight some types of cancer and blood-related diseases, such as leukemia. These transplants use adult stem cells or umbilical cord blood.
Researchers are testing adult stem cells to treat other conditions, including a number of degenerative diseases such as heart failure.
What are the potential problems with using embryonic stem cells in humans?
To be useful in people, researchers must be certain that stem cells will differentiate into the specific cell types desired.
Finding the Right Doctor or Motor Specialist
What kind of doctor should I be seeing? Many movement disorder patients recommend working with a movement disorders specialist. This is a neurologist who has taken additional training in diseases that affect primarily physical movement, such as Essential Tremor. Whereas a general neurologist may treat patients with any of more than 100 neurological conditions, a movement disorders specialist focuses on a handful of disorders. Specialists also often are affiliated with reputable universities or teaching hospitals.
How do I find a good movement disorders specialist? It's a lot like hunting for a good dentist or a good mechanic: You need to ask around. Your primary care doctor may be able to give you a referral. If you attend a support group, ask other disorder patients. You can also post requests on Internet bulletin board sites. But remember that the Internet should only serve as a starting point for your research and education, not your only source of information, since it is so often difficult to source and verify the advice you find there.
The Duties of a Neurologist Understanding Different Neurological Specialties
Neurologists have different duties which may vary a great deal according to the area they specialize in. There are a few different areas which a neurologist may specialize in such as: surgical, clinical, or research-based. Regardless of specialty, all neurologists must diagnose, treat, and monitor nervous system disorders.
5 Questions People Should Ask Their Doctor (But Don’t)Written By: Christina Johnson
Do you make the most of your time with your doctor? Whether you see your doctor once a year during your annual check-up or more often to manage a chronic condition, it’s a question you might want to ask yourself.
Your doctor visits are your chance to identify good health habits, change bad ones and probe your doctor’s expertise for new information that can keep you or set you on the road to healthy living.
To make the most of your limited time with your health care provider, physicians recommend making a list of topics you want – or should – discuss, including any new test results, especially if you are a new patient.
“Don’t wait until my hand is on the door knob to bring up a new chest pain or recent fainting spells,” one doctor pleaded. “Please wear your hearing aide, if you need one,” said another. Sounds obvious, right? Yet, doctors say the obvious doesn’t always happen and that can be to the detriment of your health.
Here are five questions doctors say they wish their patients asked them more often but don’t. You may notice a recurring theme.
Your primary care physician may not be as gung-ho about a medication as you might imagine, so the next time you visit your doctor, bring a full list of all medications you are taking (over the counter and prescribed) for a re-evaluation of their necessity. Even if you shouldn’t stop taking a particular medication, you might be able to reduce its dosage. Also, doctors say you should not be shy about asking if there are less expensive alternatives to your current treatment regime.
“So often, we focus on medications or specialty referrals that treat a person’s symptoms now,” said Laura Greci, MD primary care physician and associate clinical professor of medicine, UC San Diego School of Medicine. “But there are simple home remedies, including exercises and other lifestyle modifications that can really make a big difference in a person’s health, both in the short- and long-term.”
One caveat: Do not stop taking a prescribed medication without first consulting your physician.
“Some medications can be dangerous to stop abruptly and may need to be tapered,” said Jennifer Deconde, MD a primary care physician and assistant clinical professor of medicine with UC San Diego School of Medicine. “Make sure you talk to your doctor before making any changes to your medications.”
Mother Nature has inspired many life-improving, even life-saving, compounds and substances, but remember that health products and supplements marketed as “natural” are not subject to the same rigorous scientific scrutiny as prescription medications – either for safety or effectiveness.
“I recommend that patients ask their doctor about any supplements they are taking,” said Ali Mirza, MD , a geriatrician and associate clinical professor of medicine with UC San Diego School of Medicine. “Many are expensive and unnecessary and are marketed to the public without any evidence-based science.”
Some supplements, including herb teas, can also interfere with your medications.
The medical equivalent of rotating your tires and changing your oil is to keep up-to-date on vaccines and routine screenings, such as mammograms and colonoscopies, as well as blood panels to measure cholesterol and glucose levels.
By keeping up-to-date on routine health maintenance appropriate to your age, gender and health status, you take full advantage of modern medicine and its ability to detect disease or risk factors for disease early. This gives you a jump start on successful treatment.
“Routine maintenance is something that a lot of patients forget about,” said Miguel Casillas, MD a primary care physician. “We often deal with the single, acute issue that brought a person into our office that day or maybe a follow-up for a chronic disease. The main point to remember it that is it much better to prevent a disease than to treat it, and if we cannot prevent it, then we need to detect it as early as possible.”
It’s no secret that diet, exercise and other lifestyle choices can go a long way to preventing heart disease, type 2 diabetes, osteoporosis and even certain types of cancer. So don’t hesitate to ask your doctor about your body mass index (BMI), alcohol consumption and other lifestyle factors, including interpersonal relationship issues which can affect health and happiness.
“My passion really is in educating patients on what they should be doing to stay healthy and supporting them in choosing to keep a healthy lifestyle,” said Amy Guigliano, MD, primary care physician. “In addition to making sure my patients are up-to-date with appropriate screening tests, I spend a lot of time talking about lifestyle. Many chronic diseases can be prevented or managed with a healthy lifestyle.”
Some elements of a healthy lifestyle, said Guigliano, include at least 150 minutes of moderately intense aerobic exercise per week; two days of resistance training each week; eating a high-fiber diet that is low in processed foods; keeping a normal BMI; getting adequate sleep and reducing stress, if stress is an issue.
“These lifestyle interventions may seem simple and common sense, but a majority of people are not doing them,” she said. “One of my goals is to help people make them a priority and regular part of their life.”
UC San Diego Health System offers a variety of programs to help people eat better, lose weight, reduce stress and become more educated about their health condition.
“If I know that my patients are open to this extra support, I can guide them in the right direction,” said Greci, who sees patients in North County.
Come with questions. Leave with a plan.
“I've answered thousands of questions from patients during their visits,” said Christopher Searles, MD , medical director, UC San Diego Health System Downtown Family Health and Wellness Clinic. “But, one question stands out for its ability to focus the visit on the issues that matter most: What’s next?”
“Patients should leave their doctor’s office with a road map for what they need to do, work on, or be aware of, between visits,” said Searles, who is also an associate clinical professor at UC San Diego School of Medicine. “For every diagnosis on their list, people should know what's next in their treatment plan; how to monitor symptoms or side effects, especially with new medications, and when they should return for a follow-up visit.”
You should know what your doctor will be doing next, too. Will there be a referral to a specialist? Will your physician be reviewing medical records from a recent admission to a hospital and adjusting your health plan accordingly?
“By fully understanding what comes next, you and your doctor can work as a team to further your health,” he said. “The next time you’re at your doctor’s office don’t leave without knowing what comes next.”
My story about ET by Vibeke
This is actually quit emotional. Putting words to something I tried to hide and ignore for a lot of years. The first comment I had about shivering was in 8th or 9th grade, approximately 14 years old. A classmate commented, I think she was worried maybe, but somehow it hurt me and confused me. I had never seen a doctor about it, and we never talked about my tremor at home. My mother had the same thing, but at another level, so somehow I never connected the two. I think not having an answer to give, was most uncomfortable.
Once in my early teens, we were visiting my sister and brother in law. As usual I came to spill out a drink, and he got somewhat angry. Maybe not too much, but of cause it felt unfair. My mother had to come to rescue and explain. I don`t remember this episode, she told me when we finally discussed the condition a few years ago. I
think there must have been a lot more...
Day to day life, growing up with tremor, not too badly affected, I think I adapted the best way I could. I was
copying some of my mother’s habits, not thinking too much about it. But, of cause, some things I hated. To write on the blackboard, not having anything to lean my hand on... I just understood that one yesterday, reading the teachers manual at the IETF website. My handwriting has never been pretty, except if I take a lot of time and effort. I write readable, if I try, but like a shopping list hastily put down is a challenge for my husband or anyone else to read. This was always put down as a family weakness from my father’s side, but I`m reconsidering... Tremor is a much more valid explanation. I preferred to part the letters, maybe a coping strategy, I don`t know, but the teachers didn`t approve. Today I do something in between and it works for me, both in speed and readability. I`ve finished my part of exams and time usually is not the issue... Although knowing it might be, and knowing that gives the possibility of extra time, could be a benefit for my son, who has inherited this condition.
(I`m not expecting any more exams, but with the conditioning worsening, you never know.) My problem though threw long exams, has been aces after wards, probably from grasping hard to the pen.
Another school-related topic was that about having somewhere to place your manuscript. Holding a piece of paper and reading at the same time... It just doesn’t work, and you look (maybe feel) like a fool. Today, I find myself in waiting rooms, like the doctor’s office, trying to read a magazine, but my hands shivering while I`m holding it up from my lap, so I can`t read and it just feels so stupid. So I put it away and do nothing. (And my doctor is usually really late, so that’s boring.)
Lately we received a report from school, stating that I seemed nervous. That one was hard to swallow. What do they actually know? Kindergarten said the same about my son earlier... How people perceive you can be very important, and hurtful. I tell people about ET, when it seems natural, but not everyone should need to know.
Today, any fine movement skills may be troublesome. Screwdrivers, sewing, knitting, the smaller, the more parts, the worse to handle... And I love doing handcraft... Why, I have no idea. After working out, my tremor is especially bad, but things like anxiety or stress will also impact a lot.
ET is not a well axepted diagnoses as far as help comes. Parkinson patients get their meds for free, we don`t. No matter how serious the tremor.
Sitting here writing, I keep hitting the wrong buttons. Sometimes because I am writing a foreign language, using odd keys, but mostly shivering over the emotional stress. Well, not the first time writing and correcting... Bad tremor-days, I might even miss with the mouse, but usually that works, since I have support from the table. I`ve got a keyboard with support for the wrist, first because of pain, but maybe that was related to
the need for support? Reading about ET and reading other peoples stories gives me a lot of thoughts about how things relate to each other... Not that many solutions.
Specialized Care Urged for Treating Parkinson's Disease
Advocacy Groups Urge Patients to See Specialists for Movement Diseases
By LAURA LANDRO
Beth Hochstein (center) gave up a career as a podiatrist several years after a diagnosis of young-onset Parkinson's disease.. She now is a Zumba instructor and leads classes for people with Parkinson's near her home in Great Neck, N.Y. Zumba Fitness
A new push is on to provide more specialized care for millions of people with Parkinson's disease and related conditions that impair control of body movement.
Advocacy groups say many doctors aren't extensively trained in treating these conditions, yet studies have shown that only some 40% to 60% of patients ever seek care from a specialist.
Patients benefit most under the care of a neurologist with extra training in movement disorders, backed up by a team including mental health professionals and physical and occupational therapists who can help with the diseases' physical and emotional toll, advocates say.
World-wide, the number of Parkinson's patients alone is projected to double by 2030. The aging population accounts for much of the rise in movement disorders, but they are also being diagnosed in younger patients and can be inherited. Parkinson's affects an estimated 1 million to 1.5 million people in the U.S.
For unknown reasons, Parkinson's leads to degeneration in brain structures called basal ganglia, as well as a loss of chemicals, especially dopamine. The loss causes nerve cells to go haywire and can result in tremors, stiffness and loss of motor control, as well as depression and thinking problems. Dystonia, or involuntary, prolonged and often painful muscle contractions, is caused by dysfunction in similar brain regions and affects about 500,000 people, including some Parkinson's patients. Another condition known as essential tremor, which affected the actress Katharine Hepburn, occurs in as many as 10 million people, and some will develop Parkinson's or dystonia.
Movement disorders often progress slowly and can be controlled with drugs including the central nervous system agent levodopa. There are side effects, such as fluctuations in the ability to control movements, low blood pressure and confusion.
Some patients are candidates for surgical procedures such as deep brain stimulation, in which abnormal movements are regulated with electrical impulses from electrodes implanted in the brain. Side effects can include seizure and mood changes and there can be problems with hardware or poor placement of electrodes, among other issues.
New drugs are in the pipeline, and genetic research is yielding promising clues for future treatment. But the least expensive and most accessible treatment often isn't stressed by doctors unaware of its benefits: Exercise, including dance, has been shown to lead to sharp improvements in some symptoms and may even delay progression of Parkinson's.
Beth Hochstein, who was diagnosed with young-onset Parkinson's in 2007 at age 36, was on medication to control tremors. In 2010, she had to give up her career as a podiatrist in Great Neck, N.Y., because of side effects from medication to control her hands during surgery.
A movement-disorder specialist she consulted early on had advised her that exercise "was the best nonmedical help I could get."
Dr. Hochstein had grown up dancing and took it up again, starting with hip-hop and then popular Zumba classes. She trained with a program called Dance for PD led by the Brooklyn, N.Y.-based Mark Morris Dance Company and now teaches a class affiliated with a hospital near her home.
She starts by telling participants how dance helped her control her symptoms.
Treatment centers specializing in movement disorders have expanded around the country in recent years, with funding from the federal government and nonprofits including the National Parkinson Foundation and the Bachmann-Strauss Dystonia & Parkinson Foundation.
A survey by Harris Poll that included more than 500 patients for the Michael J. Fox Foundation, named for its founder, the actor who has the disease, found that fewer than half were aware of movement-disorder specialists.
Only about 28% of Parkinson's patients surveyed were currently seeing one, and only about half felt "informed" or "very informed" about how to control their symptoms, the survey found.
Conventional treatment may not give proper weight to the link between movement disorders and mental health. Patients may experience anxiety and embarrassment caused by uncontrollable movements and tics, as well as a social stigma.
According to the National Parkinson Foundation, most physicians, especially those who lack training in movement disorders, don't know how to deliver a diagnosis of Parkinson's and often leave the patient feeling lost and alone.
Dennis Ploszaj, 65, exercises and volunteers to help patients at the University of Toledo's Gardner-McMaster Parkinson Center. Dennis Ploszjad
Partners in Parkinson's, a new initiative from the Michael J. Fox Foundation, offers on online tool to help patients locate a movement-disorder specialist, in collaboration with the International Parkinson and Movement Disorder Society, whose members include medical specialists. With funding from pharmaceutical company AbbVie Inc., which has a Parkinson's drug in development, the Fox foundation is holding patient and family events where specialists from local clinics demonstrate a comprehensive evaluation.
Patients visiting the University of Florida Center for Movement Disorders and Neurorestoration, in Gainesville, are screened for depression, which can be caused by changes in the brain as well as by sadness about the disease's effects, said Michael Okun, the center's co-director and author of the book "Parkinson's Treatment: 10 Secrets to a Happier Life." Patients receive a neurologist's evaluation of motor function, including their gait and balance, as well as their lung function.
Dr. Okun says the aim is to prevent falls, fractures and a respiratory ailment called aspiration pneumonia, which are the leading causes of injury and death in Parkinson's patients. They can see several specialists in a single day, including mental-health and speech and communication therapists, who can help with issues like swallowing.
A study led by Peter Schmidt, vice president of research at the National Parkinson Foundation, estimates that neurologist care prevents more than 4,500 deaths a year in Parkinson's patients. The foundation trains medical teams and is conducting a large study at 20 clinics in its Centers of Excellence network to identify factors that result in longer and more active lives for Parkinson's patients.
Dennis Ploszaj, 65, of Findlay, Ohio, was diagnosed with Parkinson's in 2005 at age 56, after experiencing shakiness and balance issues while volunteering as a high-school sports referee. He says his doctor told him he might have a decade or so to live and provided little information about lifestyle changes that could help.
"Movement disorder specialist wasn't in my vocabulary," Mr. Ploszaj says. A year later, he attended a seminar held by Lawrence Elmer, director of the University of Toledo's Gardner-McMaster Parkinson Center, and signed on as a new patient.
"There is so much more to offer patients now than just, 'Here, take a pill,' " says Dr. Elmer. He told Mr. Ploszaj that it would be possible for him to delay the disease's progression and lead a good life. Dr. Elmer advised regular exercise.
Mr. Ploszaj signed up for clinical drug trials and hearing and speech therapy. With his disease under control, Mr. Ploszaj now volunteers to help other patients. "A lot of people come in very down and don't yet understand the disease, so I try to pick up their spirits." he says.
Write to Laura Landro at firstname.lastname@example.org
Fatigue and Parkinson's
Parkinsons New Zealand
Published on Oct 6, 2013
From the World Parkinson Congress 2013. Professor of Neurology, Joseph Friedman talks about fatigue and Parkinson's, and the difference between fatigue and sleepiness.
For more information about Parkinson's please go to: https://www.familyassets.com/parkinsons-disease
Dopamine Is _________?
Is it love? Gambling? Reward? Addiction?
By Bethany Brookshire
In a brain that people love to describe as “awash with chemicals,” one chemical always seems to stand out. Dopamine: the molecule behind all our most sinful behaviors and secret cravings. Dopamine is love. Dopamine is lust. Dopamine is adultery. Dopamine is motivation. Dopamine is attention. Dopamine is feminism. Dopamine is addiction.
My, dopamine’s been busy.
Dopamine is the one neurotransmitter that everyone seems to know about. Vaughn Bell once called it the Kim Kardashian of molecules, but I don’t think that’s fair to dopamine. Suffice it to say, dopamine’s big. And every week or so, you’ll see a new article come out all about dopamine.
So is dopamine your cupcake addiction? Your gambling? Your alcoholism? Your sex life? The reality is dopamine has something to do with all of these. But it is none of them. Dopamine is a chemical in your body. That’s all. But that doesn’t make it simple.
What is dopamine? Dopamine is one of the chemical signals that pass information from one neuron to the next in the tiny spaces between them. When it is released from the first neuron, it floats into the space (the synapse) between the two neurons, and it bumps against receptors for it on the other side that then send a signal down the receiving neuron. That sounds very simple, but when you scale it up from a single pair of neurons to the vast networks in your brain, it quickly becomes complex. The effects of dopamine release depend on where it’s coming from, where the receiving neurons are going and what type of neurons they are, what receptors are binding the dopamine (there are five known types), and what role both the releasing and receiving neurons are playing.
And dopamine is busy! It’s involved in many different important pathways. But when most people talk about dopamine, particularly when they talk about motivation, addiction, attention, or lust, they are talking about the dopamine pathway known as the mesolimbic pathway, which starts with cells in the ventral tegmental area, buried deep in the middle of the brain, which send their projections out to places like the nucleus accumbens and the cortex. Increases in dopamine release in the nucleus accumbens occur in response to sex, drugs, and rock and roll. And dopamine signaling in this area is changed during the course of drug addiction. All abused drugs, from alcohol to cocaine to heroin, increase dopamine in this area in one way or another, and many people like to describe a spike in dopamine as “motivation” or “pleasure.” But that’s not quite it. Really, dopamine is signaling feedback for predicted rewards. If you, say, have learned to associate a cue (like a crack pipe) with a hit of crack, you will start getting increases in dopamine in the nucleus accumbens in response to the sight of the pipe, as your brain predicts the reward. But if you then don’t get your hit, well, then dopamine can decrease, and that’s not a good feeling. So you’d think that maybe dopamine predicts reward. But again, it gets more complex. For example, dopamine can increase in the nucleus accumbens in people with post-traumatic stress disorder when they are experiencing heightened vigilance and paranoia. So you might say, in this brain area at least, dopamine isn’t addiction or reward or fear. Instead, it’s what we call salience. Salience is more than attention: It’s a sign of something that needs to be paid attention to, something that stands out. This may be part of the mesolimbic role in attention deficit hyperactivity disorder and also a part of its role in addiction.
But dopamine itself? It’s not salience. It has far more roles in the brain to play. For example, dopamine plays a big role in starting movement, and the destruction of dopamine neurons in an area of the brain called the substantia nigra is what produces the symptoms of Parkinson’s disease. Dopamine also plays an important role as a hormone, inhibiting prolactin to stop the release of breast milk. Back in the mesolimbic pathway, dopamine can play a role in psychosis, and many antipsychotics for treatment of schizophrenia target dopamine. Dopamine is involved in the frontal cortex in executive functions like attention. In the rest of the body, dopamine is involved in nausea, in kidney function, and in heart function.
With all of these wonderful, interesting things that dopamine does, it gets my goat to see dopamine simplified to things like “attention” or “addiction.” After all, it’s so easy to say “dopamine is X” and call it a day. It’s comforting. You feel like you know the truth at some fundamental biological level, and that’s that. And there are always enough studies out there showing the role of dopamine in X to leave you convinced. But simplifying dopamine, or any chemical in the brain, down to a single action or result gives people a false picture of what it is and what it does. If you think that dopamine is motivation, then more must be better, right? Not necessarily! Because if dopamine is also “pleasure” or “high,” then too much is far too much of a good thing. If you think of dopamine as only being about pleasure or only being about attention, you’ll end up with a false idea of some of the problems involving dopamine, like drug addiction or attention deficit hyperactivity disorder, and you’ll end up with false ideas of how to fix them.
The other reason I don’t like the “dopamine is” craze is because the simplification takes away the wonder of dopamine. If you believe “dopamine is,” then you’d think that we’ve got it all figured out. You begin to wonder why we haven’t solved this addiction problem yet. Complexity means that the diseases associated with dopamine (or with any other chemical or part of the brain, for that matter) are often difficult to understand and even more difficult to treat.
By emphasizing dopamine’s complexity, it might feel like I’m taking away some of the glamour, the sexiness, of dopamine. But I don’t think so. The complexity of how a neurotransmitter behaves is what makes it wonderful. The simplicity of a single molecule and its receptors is what makes dopamine so flexible and what allows the resulting systems to be so complex. And it’s not just dopamine. While dopamine has just five receptor type, another neurotransmitter, serotonin, has 14 currently known and even more that are thought to exist. Other neurotransmitters have receptors with different subtypes, all expressed in different places, and where each combination can produce a different result. There are many types of neurons, and they make billions and billions of connections. And all of this so you can walk, talk, eat, fall in love, get married, get divorced, get addicted to cocaine, and come out on top of your addiction some day. When you think of the sheer number of connections required simply for you to read and understand this sentence—from eyes to brain, to processing, to understanding, to movement as your fingers scroll down the page—you begin to feel a sense of awe. Our brain does all this, even while it makes us think about pepperoni pizza and what that text your crush sent really means. Complexity makes the brain the fascinating and mind-boggling thing that it is.
So dopamine has to do with addiction, whether to cupcakes or cocaine. It has to do with lust and love. It has to do with milk. It has to do with movement, motivation, attention, psychosis. Dopamine plays a role in all of these. But it is none of them, and we shouldn’t want it to be. Its complexity is what makes it great. It shows us what, with a single molecule, the brain can do.
Bethany Brookshire recently completed a postdoc in behavioral neuroscience at the University of Pennsylvania School of Medicine. She blogs for Scientific American at The Scicurious Brain and for Scientopia at Neurotic Physiology. You can follow her on Twitter at @scicurious.