UVA Health System Blog

Stories about the patients, staff and services of UVA

 

‘A Terrible Disease’: Why We’re Taking the ALS Ice Bucket Challenge [VIDEO]

On August 27, 2014 | At 10:24 am

My dad doesn’t know the difference between texting and tweeting. So when I told him I had just taken the ALS Ice Bucket Challenge, I expected I’d have to explain just what that was. Instead he said, “Oh, that’s really cool!”

UVA Department of Neurology takes the ALS ice bucket challenge.

UVA neurologists take the ALS Ice Bucket Challenge.

That’s when I knew this thing was everywhere.

What is ALS?

As many as 30,000 Americans have ALS (also known as Lou Gehrig’s disease) right now, according to the ALS Association, but neurologist Ted Burns, MD, works with patients who didn’t know what ALS was until they were diagnosed with it.

“It’s a terrible disease,” he says.

Essentially, ALS causes the neurons that control muscle activity to degenerate and die, so they can no longer signal the muscles. The onset of muscle weakness can begin just about anywhere. Patients may initially develop weakness in the arms, legs and neck, and eventually they lose their ability to speak, swallow and breathe. Others first note trouble speaking, swallowing or breathing.

They may die within 3-5 years of developing symptoms, although Burns has patients who have had it for 20 years or longer. Why some people deteriorate faster than others is one of the many unknowns of ALS.

Where the Money Goes for ALS

There is no cure for ALS, and the one FDA-approved treatment, a drug called riluzole, only slows progression by a few months on average. Donations to the ALS Assocation fund clinical trials to find better treatments and a cure.

Researchers and doctors are also working to understand why some patients develop ALS when they have no clear genetic predisposition and what exactly ALS does to motor neurons and the cells around them.

“The money will be put to good use, but we need to keep raising money,” Burns says.

At UVA, researchers are looking at the quality of life of patients and collaborating with other ALS centers to share important clinical data to better understand the disease.

ALS Care in Charlottesville

UVA’s Richard R. Dart ALS Clinic offers physical, occupational and speech therapy, along with support from a team that also includes neurologists, nurse coordinators, social workers and nutritionists.

The clinic has about 90 patients, and Burns says the group of employees has been consistent over the last 10 to 15 years. “Very dedicated, experienced care providers,” he says.  

Watch UVA Employees Take the Ice Bucket Challenge

We’ll add more videos as more employees take the challenge. Check back or follow us on Twitter to see them!

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Podcast Tuesday: When to Consider a Hip Replacement [AUDIO]

On August 26, 2014 | At 10:09 am

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Podcast Tuesday: Treating External Iliac Arteriopathy in Avid Bicyclists [AUDIO]

On August 19, 2014 | At 10:29 am

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Q&A: Robin Williams and What You Should Know About Depression and Suicide

On August 18, 2014 | At 10:35 am

The sudden death of actor Robin Williams has put mental illness and Parkinson’s disease in the spotlight. Kim Penberthy, PhD, works with patients who have severe depression and talks about the stigmas, myths and what you can do to help.

Kim Penberthy, PhD, answers FAQs about depression and bipolar disorder after the death of Robin Williams.

Kim Penberthy, PhD

Are there any common myths about depression and suicide you want to address?

I think that the biggest myth may be that depression and suicide are indicators of immorality and weakness in a person. Depression is an illness. People who suffer from mental illness may be drawn to suicide because they feel that they have no other option to deal with the pain and suffering of severe chronic depression.

Does depression always have a physical cause, such as a chemical imbalance?

Depression and bipolar do seem to run in families, and there does seem to be a genetic component to many mental illnesses. But even when you find a genetic component, it still only accounts for a very small percentage of the likelihood of developing the disorder.

We are all also impacted by environmental factors, which include your development history or the way you were raised, the culture in which you live, and your current environment. In my field, we assume it’s a combination of biological, psychological and social factors.

Not being Robin Williams’ doctor, it’s hard to say what happened. I will say he is part of a demographic that is increasingly attempting and completing suicide — white middle-aged men. It used to be the highest rates of suicide occurred in the elderly and teenagers, but that has changed recently and we don’t really know why. There might be something unique about the stress of being a white middle-aged male in our society at this time that is driving that rate to increase.

Men are more likely to commit suicide than women. The data indicate that for every women who kills herself, 3.6 men commit suicide. Men also use more lethal means, like hanging themselves or shooting themselves.

Robin Williams made us laugh, so it’s easy to assume he was a happy person. But people often make jokes to avoid discussing serious topics. Is there a link between this and depression?

Yes, some people use humor to avoid discussing, but it’s hard to make generalized statements about depressed people using humor to cope with or avoid dealing with their depression. For example, many of the severely depressed individuals that I treat are so lethargic and sad that they have no energy or interest in making jokes. They may be barely able get out of bed and get dressed, so they certainly don’t have the energy to make a joke.

I think it really depends on the severity of the depression that we’re talking about. But I think we also have to realize that actors are acting a lot of their lives. He was a very talented actor, and I don’t think any of us have a full understanding of his private life.

What are some of the treatments for depression and bipolar disorder?

There is a difference diagnostically between chronic and episodic depressive disorders. It sounds like from what I read that Robin Williams may have had a chronic illness, and these kind of persistent disorders respond best to treatments designed specifically for them.

Cognitive Behavioral Therapy (CBT) and antidepressant medications and/or mood stabilizers are typically the most common and most effective treatment for depression and bipolar disorders and can be very effective in alleviating symptoms in these disorders.  We have found, however that chronic or persistent depression may require an augmented treatment approach.

Something called Cognitive Behavioral Analysis System of Psychotherapy or CBASP is the only proven effective psychotherapy treatment for chronic or persistent depression when combined with effective antidepressant medications. A challenge is that many of these very sophisticated treatments that take a lot of training to learn are not available to many people, and we need to change that.

Patients often need to be on medication and therapy, and some research does show that both are more effective combined than alone.

What can you do to help a friend or family member? How should you react if the person blows it off with a joke or seems to snap out of it?

Sometimes it really helps to let the person know they have people in their life who care about them, but often with persistently depressed individuals, they may not believe this or acknowledge it. If a loved one is suffering from depression or bipolar disorder and has not been seen for treatment, I would recommend talking with them in a supportive and loving way about getting treatment. I recommend you ask them, if they really feel like they don’t want to get treatment for themselves, could they do it for the people they love.

If someone is actively suicidal, you need to call 911.

Why is there a stigma around mental illness?

I really don’t know. That’s a really good question. I used to think it was because mental illness is not always physically visible in the person who has it  — it is more evident in our moods and thoughts — and it seems somehow different than other diseases and illnesses such as diabetes or cancer. Because of this, there may be a sense that we can control it and because of this we may think if a person is sad and cannot snap out of it they are weak or not trying. We equate it with our own emotions: ”I remember when I was sad that my cat died, and I got over it, so why can’t you get over this?”

If anything good comes out of it this tragic event, it may be an increased awareness that this could happen to anyone. Anyone can be depressed or bipolar, just like anyone can have diabetes or cancer. It’s got nothing to do with your morality or character. I hope additional conversations continue about implementation of early detection, assessment and effective treatments for depression, bipolar illness, and other mental disorders.

What are some of the warning signs of suicide?

The warning signs can be variable or non-existent. Obviously, people suffering from depression and bipolar disorder are at higher risk, and people who endorse wanting to kill themselves are at very high risk. Some people will let you know that they are feeling overwhelmed and thinking of killing themselves while others may go about discussing it in non-direct ways like saying, “I can’t go on like this.” Often, people may make plans for their death by suicide, such as giving items away or planning for their pets to be cared for.  So when you see someone preparing to not be there, when they’re not going on vacation or going on a trip, that can be a warning sign.

Additionally, anyone using drugs or alcohol, may be at increased risk for suicide due to the disinhibiting qualities of such substances.

Often increased hopelessness is associated with increased risk of suicidality.  It is thought that this may happen because the depressed individual does not see any possibility of change. The pain is too bad, the pain is too intense, and they don’t have any hope of change – they can see no other way out

When pain from the depression is intense and hope is low or nonexistent, that’s when depressed individuals may be at highest risk for suicide.

What about someone who has just experienced a tragedy like the death of a child? Is that person more likely to become suicidal?

My understanding is that this may not be a common factor in increasing the likelihood of suicide. Suicide is usually associated with a severe mental illness, something like bipolar disorder or depression, but certainly may be exacerbated by situations in the person’s environment.

How can you help a friend or family member who has lost someone to suicide?

Listening and being there for that person are going to be the most important things you can do. If you think they’re suffering so much that they need treatment, you may wish to gently suggest such. It may be an overwhelming, confusing time for a person who has lost a loved one to suicide and often the people who remain are experiencing a wide range of emotions. They may be angry, confused, they may be frustrated — deeply hurt and sad. That’s OK, don’t take it personally, just be there for them.

If you or a loved one is having symptoms of depression, start by talking to your primary care doctor. Don’t have a PCP? Find one and make an appointment online.

If you think someone may be suicidal, contact the National Suicide Prevention Lifeline at 1.800.273.TALK (8255).

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Sports Cardiology: UVA Provides Elite Care for Athletes

On August 14, 2014 | At 9:08 am

Playing a sport is a great way to stay healthy. It keeps the body in shape, provides a tremendous sense of accomplishment and even brings some awesome mental health benefits. The cardiovascular rewards are second to none, but athletes of all ages have special needs when it comes to their hearts. Intense training and competition can sometimes have risks.

Sports cardiologist Robert Battle, MD, and Virginia Cavaliers basketball player Malcolm Brogdon

Dr. Battle evaluates UVA basketball player Malcolm Brogdon. Dr. Battle serves as team cardiologist for UVA’s athletic teams.

UVA sports cardiologist Robert Battle, MD, helps athletes of all ages safely pursue the sports they love and maximize their performance. Battle serves as team cardiologist for UVA’s athletic teams and evaluates each player before they participate.

“Our focus is on keeping athletes playing whenever we can,” Battle says. “If we find a problem, we can help the athlete understand it and weigh the risks. We have excellent trainers and medical staff available. Too often, athletes are sidelined and suffer a devastating end to their careers.”

Evaluation of Athletes

Sports cardiology is an emerging field, and Battle’s team of specialists is at the forefront of the field. Their services include:

  • Assessment, including a thorough medical and training history
  • EKG, or electrocardiogram, to evaluate the heart’s electrical system and check for arrhythmias
  • Echocardiogram to evaluate the structure and anatomy of the heart
  • Exercise stress testing to evaluate the heart during exercise
  • Genetic testing when needed for inherited heart problems

“We are truly cutting edge with what we can provide,” he says. “We’re going way beyond what is typically delivered to give athletes the very best.”

Preventing Sudden Cardiac Death

Athletes who are in excellent physical condition often look incredibly healthy, but heart problems can lurk under the surface. One problem that makes headlines when it happens is sudden cardiac death. It’s extremely rare, Battle says, but something everyone wants to prevent.

Sudden cardiac death can be caused by a variety of underlying heart abnormalities that can be routinely detected with testing, Battle says. One example is hypertrophic cardiomyopathy, a condition in which the heart is unusually thick and enlarged. By catching it early, a serious cardiac event can often be prevented.

Genetic Testing Can Help Make The Diagnosis

Genetic testing is becoming increasingly helpful in determining whether or not a possible heart problem exists in an athlete. “Their doctor may see signs that are suspicious of an inherited heart problem, and we can then test for the genes linked to it,” explains Matthew Thomas, a genetic counselor at UVA who specializes in cardiovascular conditions. “Sometimes the news is good. The genetic test may reveal they do not have the condition, which allows them to continue playing.

“Sometimes the news is bad. They may carry a gene predisposing them to a serious condition, but knowing this can help us avoid a potentially fatal cardiac event. If they must stop playing a sport they love, there is still hope. We do our best to help them transition to life without competitive sports and find other passions that can provide them fulfillment.”

Staying In The Game

Some heart abnormalities are perfectly harmless, and it’s important that athletes are not disqualified in these circumstances, Battle says. For example, highly trained athletes can develop “athlete’s heart,” a condition in which the heart muscle becomes larger due to intense training. It can be mistaken for hypertrophic cardiomyopathy — and sideline an athlete — when in fact the heart is in tip-top condition.

“It’s important to have an understanding of the world of the athlete and the various training programs out there,” Battle says. “Only then can you have a true sense of the situation.”

When To See A Sports Cardiologist

Athletes of all ages can access this elite care. Common reasons to seek a sports cardiology evaluation include:

  • Pre-participation screening before a sport, especially for high school or college athletes
  • Chest pain or shortness of breath during training, palpitations or rapid heartbeat, fainting during exercise
  • Unexplained fatigue
  • Sudden decrease in performance
  • Family history of heart problems

Battle’s passion for his field stems from his own participation in sports. He was a collegiate athlete who played lacrosse for Dartmouth College. He played high school baseball, basketball and football. Today, he swims three miles a day.

Most of all, he shares a passion for athletes and their cardiac health. “For a dedicated athlete, it’s not just a sport. This is their self-identity. It is what brings meaning to their lives.”

Athletes who want to enjoy sports and reduce the risks have a winning team of cardiac experts at UVA.

Need a sports cardiology evaluation? Contact our Heart Center at 434.270.0901 and mention that you are calling about heart screenings for athletes.

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Vim & Vigor: Robin Roberts, Pancreatic Cancer and Healthy Hearts

On August 13, 2014 | At 9:07 am
UVA pediatric nurse Delores Schrock spends time volunteering abroad. Read about it in Vim & Vigor.

UVA pediatric nurse Delores Schrock spends time volunteering abroad. Read about it in Vim & Vigor.

In 2012, Good Morning America anchorwoman Robin Roberts was diagnosed with myelodysplastic syndrome (MDS), a rare blood disease resulting from chemotherapy treatments for breast cancer. Though bone marrow donors are few, especially for African-American women, Roberts could count on her sister for the life-saving donation.

Roberts’ full story is featured in the Fall 2014 issue of UVA’s family health magazine, Vim & Vigor. Check it out for stories about:

  • Getting tested for pancreatic cancer and new breakthroughs in the field
  • 10 steps to a healthier heart
  • At-home strength training for older adults
  • Adrian Chance, one of the few people to survive two cardiac arrests

Read the online version here.

Live in Virginia? Sign up to receive Vim & Vigor in the mail for free.

 
 

Podcast Tuesday: When Children May Benefit from Robotic Surgery [AUDIO]

On August 12, 2014 | At 8:36 am

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Monthly Roundup: July 2014

On August 6, 2014 | At 9:12 am

The past month we featured some remarkable and inspirational patient stories about rare conditions with big impacts:

Kathy and her daughters all have long QT syndrome, a form of abnormal heart rhythm

Kathy Cundiff (center) and daughters Molly Winstead (left) and Emily Phillips

  • Cathy Cundiff protects her health as well as that of her daughters – she is aware of the inherited disorder, Long QT Syndrome, and its abnormal affects on the heart.
  • Devon Hendricks gets treatment for pseudotumor cerebri, relieving headaches and restoring her vision and hearing after six long years.
  • Adrian Chance learns about Brugada Syndrome, a genetic heart defect causing his heart to stop pumping – he also learns his sons do not share the life-threatening trait.
  • Michael G. Douvas, MD, speaks on treating sarcomas, a rare cancer that often shows no symptoms but can affect almost any part of the body.

UVA In the News

Stories that made the news this month:

  • A local tennis player gets to continue his passion for the sport due to a lung transplant, generously donated by an unknown stranger. (The Daily Progress)
  • Community donations gathered at the Ray of Sunshine Festival help a young girl overcome a rare form of cancer. (NBC 29)
  • A brain surgery patient returns to UVA to follow in his doctor’s footsteps and pursue his dream of helping others like him. (The Daily Progress)
  • Joe Thomas begins a program to help cancer patients face their diagnosis and overcome it at the Cancer Center. (Monticello Media)
 
 

Podcast Tuesday: Streamlining Weeks of Cancer Treatment to One Day [AUDIO]

On August 5, 2014 | At 9:00 am

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Junior Volunteers Help Breach Communication Barriers with MyChart

On August 1, 2014 | At 10:03 am

Cassie Hobbs is a rising high school senior, and this is her third summer volunteering through our junior volunteer program. Did you miss her first post this summer? Find out what she had to say about orientation and hospital rules.

There’s an easy way to communicate at UVA, and it’s an electronic medical record (EMR) known as MyChart. Staff at University Medical Associates, otherwise known as UMA, requested assistance linking this UVA service to the patients in their waiting room. MyChart allows patients access to their medical records via an interactive resource: The internet. Patients can access information such as medical history, available prescriptions, future appointment dates and laboratory test results, which they may not have had immediate access to before. In addition, it allows for quick and efficient communication between patients and their doctors.

A volunteer helps with MyChart.

Volunteer Initha Setiady helps patients sign up for the Health System’s electronic medical record.

But for some patients, signing up for MyChart is more than a little confusing. That’s where Junior Volunteers (JVs) come in. Part of the JVs’ job is to mingle with patients, to chat with them, and hopefully discuss MyChart, encouraging patients to use the new resource. JVs provide information and assistance, offering to walk patients through the sign-up process. Sometimes their attention is received positively, but other times it’s unwelcome. One JV said that most of the patients she has dealt with are very honest about their opinions of MyChart: “[Some] patients will deny any interest before you begin explaining,” she said, “[but] some patients are very interested in it, which is also good.”

Erin Sams, another JV, says she thinks patients sometimes find them an inconvenience. “Some say yes [when asked to sign up for MyChart], but I think some think we’re annoying.” According to Sams, others refuse because they don’t have internet at home.

But patient response notwithstanding, the JVs that work with UMA find MyChart to be a good idea. “It’s a good experience,” said Sams, when asked about her work with UMA and MyChart. “[MyChart] is a good idea. It makes health easier for the patient and Health System.” Peggy Nees, clinical operations coordinator for UMA, reported that the JVs helped 75 patients sign up for MyChart in the first 4 weeks of the program this summer!

Need a MyChart Account?

Access your EMR and talk to your doctor from your computer or smartphone. Sign up and download the iPhone or Android app.

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