As a 37-year survivor of a brain injury, Marvel Vena understands the unique issues that neurointensive care patients and their families endure. She is devoted to making positive changes for patients both locally and nationally, and as a volunteer at Rush she has touched the lives of thousands of patients and their families. Her devotion to helping others turn disability into possibility has earned her this year’s Eugene J-M.A. Thonar, PhD, Award.
“Marvel has embraced Dr. Thonar’s achievements in helping patients relish life differently,” says Barbara Klawans, who has worked closely with Vena through Rush’s Physical Medicine and Rehabilitation program. “They both display positive attitudes and push the boundaries as crusaders for patients with fundamental desires to transition from vulnerable to developing resilience in spite of their disabilities.”
Making sure ‘someone is there to help them’
At Rush, Vena was instrumental in the creation of the Family Information Group. Founded in 2002, the group meets with families of current neurointensive care unit patients every Wednesday afternoon. The purpose of the group is to provide necessary information needed to navigate through treatment and recovery.
Give light, and the darkness will disappear of itself. — Desiderius Erasmus
On May 18, 2017, a number of South American families living with Huntington’s disease had the chance of a lifetime: to hold an audience with Pope Francis I at the Vatican in Rome. This meeting was a collaborative effort between the medical communities in Venezuela, Colombia, and Argentina and the Huntington’s disease community worldwide to bring visibility to HD, reduce stigma, and offer a global stage for amazing individuals to share their stories and shine light on this debilitating condition.
Huntington’s disease is an inherited disease that causes certain nerve cells in the brain to degenerate or waste away. This degeneration causes uncontrolled movements, loss of mental capacities and emotional disturbance. According to the Huntington’s Disease Society of America, “Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s — simultaneously.”
People are born with the defective gene, but symptoms typically don’t appear until age 30 or older, often in the prime of a person’s life. The disease is passed from parent to child through a mutation in the normal gene, so if one of your parents has Huntington’s disease, you have a 50 percent chance of getting it.
At our last Without Warning meeting, Bob, whose wife passed away from younger-onset Alzheimer’s disease several years ago, told me something interesting. He realized that during the 10 years he has been attending Without Warning meetings, he has learned how to share his story. While sharing your story might seem like a small task, I’ve grown to realize that it is a profound and healing skill.
Without Warning, a 13-year-old support program of the Rush Alzheimer’s Disease Center, is for families living with younger-onset Alzheimer’s disease. Younger-onset Alzheimer’s means the person is diagnosed by the age of 65 or younger. This is a young age to be experiencing Alzheimer’s disease. Group members might still be working, raising children, driving and have friends who aren’t experiencing such a life-changing disease. Alzheimer’s at any age can make someone feel isolated and different, but these feelings only intensify when someone is young.
‘Agony of an untold story’
The author and poet, Maya Angelo once said, “There is no greater agony than bearing an untold story inside you.” As a group facilitator, I have seen the agony of an untold story in both the person with Alzheimer’s and their family members, and there are numerous reasons their stories are not heard or told.
The passing of the actor Gene Wilder — remembered by many for his lovable portrayal of Willy Wonka — further reinforced that fact that Alzheimer’s disease does not spare anyone. Many people were no doubt surprised to hear about his diagnosis and that he died from complications of Alzheimer’s disease. After all, Gene Wilder was wildly talented, engaged in creative activities all of his life, appeared physically spry and had a wonderful imagination. How could this happen to him?
Indeed, Alzheimer’s disease dementia can happen to anyone, and crosses race/ethnicity and social economic status. More than 5.5 million people in the United States officially have Alzheimer’s disease dementia, which is an underestimation, as many people live with the disease never receive a diagnosis.
Minorities, African-Americans and Latinos are appearing to be hit harder with Alzheimer’s disease and dementia. African-Americans are at least 1.5 times more likely to develop the disease, and the data suggests the same for Latinos. Recent data is also confirming that sex and gender differences are present in Alzheimer’s disease — women are developing the disease more than men.
Lifestyle factors that may increase Alzheimer’s risk
Comorbid medical conditions such as heart disease, diabetes, nutritional deficiencies and depression all can lead to poor cognitive function and can be risk factors of Alzheimer’s disease. People with a history of hypertension also may have a greater risk for Alzheimer’s disease dementia and other dementias. In addition, people who have decreased heart function are two to three times more likely to develop significant memory loss compared to those with better heart function. Lastly, those with multiple cardiovascular risk factors were more likely to have impairment in learning, memory and verbal fluency tests and worsened over time.
“I take care of HIV-infected people who have neurological problems and I do research on progressive multifocal leukoencephalopathy.” This is my typical answer to the question: “What kind of a doctor are you? “Which most often elicits raised eyebrows, puzzled looks and a polite, “Oh, this is so interesting! Now what is it that you are actually doing?”
So I tell them that I got interested in this area when I was a med student at the beginning of the HIV epidemic. During my first forays on the wards, I saw so many young people coming down with all kinds of neurological diseases of the brain, spinal cord and nerves. Those diseases were either caused directly by HIV, or by other opportunistic infectious agents that took advantage of the patients’ lower immune defense caused by AIDS. This is when I decided to specialize in the neurological complications of HIV, and, by extension, to the care of patients with infections of the nervous system.
The paradox of PML
One of these infectious agents is JC virus, named according to the initials of a patient with PML. After his death, researchers in the U.S. isolated the virus from his brain. JC virus is a fascinating paradox: innocuous in healthy people, it resides in the majority of us as a lifelong infection in the kidneys and gets excreted in the urine without causing any disease; deadly in immunosuppressed individuals, it destroys the white matter of the brain in multiple areas, causing a variety of neurological deficits including paralysis, blindness, language dysfunction and seizures. There is no specific treatment for JC virus. Only half of patients who develop PML survive more than one year.
I recently saw a young man who had suffered a stroke. His wife, who is in the medical field, recognized his symptoms of weakness and numbness as being a possible stroke, and she called 911.
As a result, he got to the hospital quickly and was treated with an intravenous clot-busting drug called tissue plasminogen activator, or tPA, which is the only urgent medication for stroke approved by the U.S. Food and Drug Administration. When I saw him after his discharge, he was in great health with no residual effects. He spoke of playing with his young son and how blessed he felt to have recovered completely.
Know the signs
It was handy that my patient was married to someone who knew the signs of stroke. But everyone, not just medical professionals, can recognize most strokes by following the FAST acronym. In fact, a study showed that the FAST acronym can identify up to 89 percent of all strokes — all we have to do is learn it.
Knowing what FAST stands for — Face drooping (usually on one side), Arm weakness (the arm may drift down or feel numb), Speech difficulty (slurred speech or trouble getting words out or understanding others), and Time to call 911 — can make the difference in stroke recovery and survival.
There are 2.2 million people in the U.S. with epilepsy, which causes seizures that can range from mild involuntary movements to uncontrollable convulsions. Most people don’t know what to do, and unintentionally may hurt the person having the seizure by providing the wrong kind of help.
Kevin Muldoon, 50, has epilepsy and suffered from seizures until he underwent brain surgery in 2007. A patient at the Rush Epilepsy Center, he is sharing his story to help people better understand the disease and what to do in response.
I want to raise epilepsy awareness. I was born with epilepsy, and I was diagnosed when I was 2 years old.
My mother told me I had my first seizure when I was six months old. Growing up, I would have as many as three seizures a day. They lasted five minutes at least. I would be tired afterward from all the shaking. It takes a lot out of you.
Did you know that there are more women affected by stroke than men? Presently in the U.S., there are 3.8 million female stroke survivors, compared to 3 million male stroke survivors. Though stroke is the fifth leading cause of death in men, it is the third leading cause of death in women.
As our population ages, this divide between the genders will increase, with even more women having strokes than men. Not only that, but women are — for a variety of reasons — more likely to recover poorly from stroke, more likely to be in an institutional setting post-stroke, and more likely to be widowed and isolated after stroke.