“She Believed She Could, So She Did”
The story of Chloe White, a woman living with a brain tumor, epilepsy and narcolepsy.
Chloe White, a local Denver woman, is a remarkable and resilient individual who has coped with multiple neurological conditions since the young age of 11. Now 40 years old, Chloe does not look a day over 30, and she remains committed to practicing a healthy and active lifestyle. Due to her unbelievable determination, Chloe has beaten the odds, surviving a significant brain tumor and learning to live with both epilepsy and narcolepsy. Even with such a rare set of medical issues, she continues to journey her trying path, using art and volunteering as forms of therapy. Chloe is now committed to expanding her reach in the neurological disorder community by participating in symposiums and Colorado Neurological Institute’s (CNI) Epilepsy Support Group. Within these networks, her positive attitude is infectious, bringing hope and reassurance to other individuals dealing with life altering disorders.
From the age of 11, Chloe had to learn how to adjust her lifestyle to accommodate the affects of a neurological condition known as narcolepsy. Narcolepsy is a chronic sleep disorder that causes severe drowsiness and sudden waves of sleep. This disorder can interrupt a person’s everyday routine and make it difficult to engage in certain activities that require ongoing attention. Because of the affects of narcolepsy, Chloe has implemented a detailed sleep schedule to work with her medications.
By age 14, Chloe’s life became more atypical with the diagnosis of epilepsy. She began experiencing seizures caused by an inoperable, benign brain tumor, which was found the same year as her narcolepsy diagnosis. In the past, she frequently suffered from Tonic-Clonic seizures (formerly known as grand mal seizures). These seizures involve two phases, the Tonic phrase and the Clonic phase. The Tonic phase involves a loss of consciousness and the muscles suddenly contract and cause the person to fall. This phase typically last about 10 to 20 seconds. Following the Tonic phase is the Clonic phase, which is when the muscles go into rhythmic contractions. Convulsions normally last for less than two minutes. When such a seizure occurs, Chloe slowly goes through her developed action steps.
1. She tries to gain strength after her seizure ends, which is both physically and mentally exhausting. Slowly, Chloe moves from where she’s positioned.
2. Chloe reaches for the phone and calls her parents who live in the Metro Denver area. She informs them that she needs help.
3. Finally, Chloe makes it her bed and rests until her parents arrive.
Besides Tonic-Clonic seizures, Chloe experiences smaller seizures, which she designates as either a “staring seizure,” “can’t talk seizure” or an “involuntary movement seizure.”
“Staring seizure” – Chloe zones out and stares into space. She had a “staring seizure” while at her kickboxing class. Even though she was exhausted after it was over, she pushed through and got back in the ring.
“Can’t talk seizure” – “I try to talk. I know exactly what I am trying to say, yet I can’t voice what I’m trying to say. A couple words will come out and I try to continue what I am thinking.”
“Involuntary movement seizure” – “This usually starts with staring. I move my arms back and forth like I am giving myself a hug. Then I un-hug myself and my arms go straight out. That happens 3 or 4 times in a row.”
Just last year, Chloe visited University of Colorado Epilepsy Center for tests on her benign brain tumor. They found that her tumor was in fact the source of her seizures. A seizure is a common symptom in people with brain tumors. With some patients, the brain tumor can be removed, but Chloe’s is located in an inoperable part of the brain.
Because Chloe lives with both narcolepsy and epilepsy, she has had to find a balance with her medications. For narcolepsy, her medication causes her to have more energy, while her epilepsy medication causes her to feel more relaxed and sleepy. This constant tug of war is difficult to maintain. For example, just recently, Chloe began having smaller seizures on a more frequent basis. She decreased her intake of narcolepsy medication, but consequently, she grew extremely tired. She began taking four to five naps per day. Chloe remarked, “I couldn’t move, which in turn, made me scared and resulted in cataplexy (a sudden weakness of the muscles of the body brought on by strong emotion). So, two nights ago, I went back up on my narcolepsy medication in hopes of having more energy in the day and a decrease in naps. I did this knowing full well that I will probably have more small seizures, which means no driving. The past two days I have had more energy.” This situation is just one of the many times Chloe has had to deal with such a push and pull between her disorders. Still, she remains optimistic that she’ll eventually discover the ideal balance.
Chloe’s family has been supportive of her all her life. She is especially close to her sister, Lynn White. Together, Lynn and Chloe attend CNI’s Epilepsy Support Group, which is a group of individuals who gather and share stories in relation to having epilepsy. Peggy Hugger, the group leader, provides invaluable information and assistance to the participants in a variety of areas. Offered are multiple educational presentations, as well as the important aspects of fellowship and group support. Topics include medications and side effects, seizure types, first aid, stress reduction and when to talk to the doctor about seizure surgery.
As she does in CNI’s Epilepsy Support Group, Chloe would like to offer advice to others living with a neurological condition: “Attitude…this will dictate how you live the rest of your life. Be appreciative of what you have and look at the positives. Or be angry and bitter… your choice.” “Explore the alternative side of medicine. See a naturopathic, take vitamins, exercise, eat well and watch your weight.” “Establish a long term relationship with your doctor based on trust and respect.” “Don’t feel sorry for yourself.” “Keep yourself educated on current events and new medication regarding the ailment.” “Go to support groups to give yourself encouragement and to learn you are not alone.” “View the situation as an opportunity to become a stronger person. Have confidence in yourself which will in turn build character.”
“Give thanks to God for the positives in your life. For example, I can feed myself, I can walk, I can talk, I am not homeless, I have a loving family. Sometimes these things are easy to miss when focusing on your own situation.” “If you can’t work, then volunteer and serve others.” “Be positive. Don’t be negative. Don’t complain.” “Play daily brain games.”
Besides attending CNI’s support group and educational events in her spare time, Chloe loves volunteering at various nonprofit organizations, kickboxing, knitting and creating beautiful art. In addition to growing these creative passions, Chloe also has invested her time in pursuing her college degree. It took hard work and determination, but she successfully earned a BA from Colorado State University in Human Development and Family Studies with a focus on adolescents.
About seizures and epilepsy Epilepsy is one of the most common neurological disorders. Up to 10% of Americans will have a seizure in their lifetimes. In Colorado, is it estimated that approximately 40,000 people have epilepsy, and 30,000 of those live in the greater Denver area. Seizures consist of unusual sensations, behaviors or movements resulting from abnormal electrical discharges in the brain. They may result in an alteration of consciousness or even a convulsion. When a patient experiences two or more unprovoked seizures, epilepsy is typically diagnosed.
Types of seizures
Seizures are usually divided into partial or generalized events:
Partial seizures take place when the abnormal brain activity remains localized to a single area. A patient may experience sensory changes such as a strange feeling, taste or smell or even an auditory or visual hallucination. There may be movement, tremor or stiffness involving parts of the body. Consciousness may be impaired with the patient appearing confused, mumbling and unable to answer questions or perform simple tasks.
Generalized seizures occur when the entire brain is involved with the abnormal electrical activity from the beginning. There may be subtle blinking and staring for a few seconds or a patient may instead suffer a grand mal seizure or convulsion. Still other seizure types occur less frequently.
It is important to classify seizures accurately. An electroencephalogram (EEG), or brain wave, is a basic test used to categorize seizures and assess brain rhythms. An MRI (magnetic resonance imaging) is another type of test that may be used. Shown here it takes pictures of the brain from several angles to identify any possible tumors, scars or other abnormalities that may be causing the seizures.
Why visit Colorado Neurological Institute
Many people with epilepsy can control their seizures with a single medication. Children may outgrow their epilepsy and other patients may not need lifelong medication therapy. For a large number of patients, however, seizures continue to occur unpredictably. For these individuals, Colorado Neurological Institute is a place to turn for answers and care.
More information about Colorado Neurological Institute
Colorado Neurological Institute (CNI), a non-profit neuroscience organization, has been providing research, education and patient services for persons with neurological conditions and their caregivers since 1988. As the only non-profit organization in the Rocky Mountain Region of its kind, CNI offers patients easy access to comprehensive, state-of-the-art care, support services, clinical trials, outpatient neuro-rehab, counseling and more.
CNI helps patients get the care they deserve, regardless of ability to pay. Most insurances are accepted for rehabilitation services.
The primary disease groups that CNI serves include (not a complete list):
Movement Disorders (Parkinson’s Disease, Huntington’s Disease, Dystonia, gait abnormalities, balance issues, Progressive Supranuclear Palsy, Multi System Atrophy, spasticity, etc. ) Brain & spinal tumors Epilepsy and seizure disorders Head pain & migraine Sleep disorders Stroke and vascular diseases Peripheral neuropathy Traumatic brain injury Hearing disorders
Get involved with Colorado Neurological Institute
For general information about CNI, contact Nora Fabris at 303-788-4010 or firstname.lastname@example.org. For information about CNI’s Epilepsy Support Group, contact Peggy Hugger at 303-806-7417 or email@example.com. For information about supporting CNI, contact, Nancy Miller at 303-806-7415 or firstname.lastname@example.org. www.thecni.org