I just returned from an inspirational trip to the Brain Health Fair in Boston. Hosted by the American Academy of Neurology (AAN), the Brain Health Fair launched the AAN Annual Meeting uniting over 15,000 neurologists from around the world. This event was designed and executed by neurologists who were on hand to answer questions about the wonders of the brain. Attendees had the opportunity to hear about: epilepsy, multiple sclerosis, Alzheimer’s and dementia, stroke, Parkinson’s and movement disorders, pain, concussion, the latest advances in child neurology, and other brain diseases.
The keynote address on Alzheimer’s was delivered by Maria Shriver, a woman I have always admired. On the plane ride east, I dove head first into The Shriver Report, A Woman’s Nation Takes on Alzheimer’s, a study she conducted in partnership with the Alzheimer’s Association. The report sheds light on the nearly 10 million American women who are affected by Alzheimer’s as a patient or caregiver. I was astonished by the similarities this neurological disease had with pediatric epilepsy. In particular, both diseases are progressive and stigmatized. They leave the patient or caretaker feeling powerless and unaware of what to expect next. Early diagnosis is essential to healthy coping and, until recently, diagnosis occurred only after clinical symptoms were apparent and catastrophic brain damage could have already occurred.
The interconnection between Epilepsy and Alzheimer’s has been heavily researched and is a revealing insight into treatment for both diseases. More detailed information on the scientific studies can be found here:
- A 2011 study conducted by Dr. Jeffrey Noebels and published in the journal Epilepsia revealed further evidence for “an elevated comorbidity of epilepsy in Alzheimer’s Disease, particularly when linked to mutations in [certain] neural pathways.” The experimental models used “highlight the presence of [non-symptomatic] seizures” and provided further data to support the idea that seizures quicken the progression of Alzheimer’s, particularly in early-onset cases. The study concludes that there is an “urgent need” for more research into early detection of seizure activity in these patients.
- A 2012 study published in Epilepsy Currents finds that “Alzheimer’s is a clear risk factor for seizures” and that “the role of EEG and its value in predicting seizures” has not been studied enough. These studies also find that the risk for epilepsy increases with a younger age of onset for Alzheimer’s: the earliest onset patients are 87 times more likely to have epilepsy than the general population, which lessens over time but, at best, those with Alzheimer’s are still three times more likely to have epileptic seizures.
- A 2013 study published in the Journal of the AMA, Neurology, and conducted by UCSF, concluded that patients who presented with epileptic activity and Alzheimer’s also showed cognitive decline an average of 5.5 years earlier than their non-epileptic counterparts. In this study, patients with non-symptomatic seizures “also had an early onset of cognitive decline at 58.9 years, and over half of all seizures detected in the study were non-convulsive. Researchers conclude that extended EEG monitoring “appeared to be more effective than routine EEG at detecting [non-symptomatic] seizures.”
- In conclusion, these studies also agreed that the detection of non-symptomatic seizures in memory loss patients is paramount to improved treatment. Additionally, medical tests such as extended EEG have not been used or their relevance studied enough for these cases: if more Alzheimer’s patients were given extended EGGs earlier in their lives, invisible seizure activity could be detected and the outlook for these patients could improve.
Ms. Shriver’s presentation highlighted the connection between Alzheimer’s and the American woman. As a special needs mom, I can to attest to her view that the American female caretaker has “increased stress, depression, lost sleep, chronic anxiety and immune system deficiency.” This is a reality we need to face as a nation and it is daunting. According to the Alzheimer’s Association’s Alzheimer’s Disease Facts and Figures Report:
- Every 66 seconds someone in the United States develops Alzheimer’s and two thirds of them are women
- A woman in her early sixties is about two times as likely to develop Alzheimer’s than breast cancer over the remainder of her life
- By 2050, 16 million brains will have fallen victim to Alzheimer’s and a majority of them will belong to our mothers, sisters, daughters and friends
- Alzheimer’s is the only disease among the top ten causes of death in America that cannot be slowed, prevented or cured
So why are so many people getting Alzheimer’s and why are the majority of them women? To tackle this question and combat this epidemic, Maria Shriver partnered with Equinox Sports Clubs to create an inaugural MOVE FOR MINDS event at select Equinox Sports Clubs across the country taking place this Saturday, May 21, 2017. Akin to the Brain Health Fair, participants will engage their brains and bodies in experiential learning while engaged with the who’s who of brain research, fitness, food, nutrition, stress/sleep and caregiving. To participate or learn more, check out The Women’s Alzheimer’s Challenge.
At the conclusion of the presentation, I introduced myself to my long time heroine and shared Mickie’s story and our fight for pediatric epilepsy awareness. I asked Ms. Shriver if there was a centralized brain research center that wholistically studied all the neurological cerebral ailments. Ideally, this type of think tank would aggregate research, whereby we could all benefit, instead of fighting over the meager dollars doled out by the National Institute of Health (NIH). Her response was “I do not believe so, good idea…create it”. The Federal Government spends much less on Epilepsy compared to diseases that affect fewer people. Of the NIH’s $30 billion for medical research, only half of one percent is spent on Epilepsy research. This is shocking when you consider more people live with Epilepsy than Autism Spectrum Disorders, Parkinson’s disease, Multiple Sclerosis and Cerebral Palsy combined.
The more I learn about Pediatric Epilepsy and the brain, the more excited I get about future breakthroughs in research and treatment. Allow me to close with the following passage out of The Shriver Report:
“The brain is for America today what the moon was for America in the 1960s: The Next Frontier. If we make a commitment and launch more of our best doctors and scientists at the brain, they’ll one day produce treatments and prevention strategies and even cures- not just for Alzheimer’s but for a whole host of brain diseases…”
I know in my heart this is true.
Blessings,
Kristie Griess