By Rick Hiduk
The Epilepsy Foundation of Eastern Pennsylvania (EFEP), which covers a large area extending from Philadelphia north to Susquehanna, Wayne and Wyoming counties is unknown to many people in its farthest reaches who could benefit from its services. The closest support group to the Endless Mountains is conducted in Wilkes-Barre at the John Heinz Institute on the fourth Wednesday of each month.
Over the next two weeks, the EFEP will conduct three events geared to awareness of the organization and to give those living with epilepsy and their loved ones opportunities to connect. The agency also offers seizure training and recognition programs, legal & medical referrals, children & family services, adult resource services, young adult initiatives and sponsors Camp Achieve.
On Wednesday, Oct. 23, the night that the Luzerne County Support Group would usually meet, the EFEP will host a conference at the John Heinz center from 6 to 8:30 pm. Speakers will include Dr. Matthew Mercuri (above) and Dr. Maya Lichtenstein of the Geisinger Health Center and Santina Williams (below) of CB Counseling LLC of Clarks Summit.
Topics will include “Beyond Medication: Responsive Neurostimulations for Treatment in Epilepsy” – “Memory and Cognition in Epilepsy: Understanding the Issues and Tips to Help Improve” and “Regaining Control: Navigating Mental Health in the Unpredictable World of Epilepsy.” A meal will be served. Interested readers may register online at EpilepsyintheValley.org or by calling 570-592-1150.
On Saturday, Oct. 26, the EFEP will be in Wyoming County at the Tunkhannock Public Library, 220 West Tioga St. from noon to 3 pm. Mary Loughlin, who facilitates the support group meetings in Wilkes-Barre, will guide the conversation and talk about the EFEP and what it has to offer the seizure-disorder community. A meet & greet will start at noon, with program to follow at 1 pm. Light refreshments will be served. Registration is recommended via the phone number above or by emailing epilepsywv@efepa.org.
On Sunday, Nov. 3, the EFEP is back in Wilkes-Barre with an all-ages fun event at Chacko’s Family Bowling Center, 195 Wilkes-Barre Blvd. The “Strike Out Epilepsy” bowl-a-thon will run from 3 to 5 pm and costs just $15 per participant, which covers the cost of bowling and shoe rental. Registration is recommended via phone or email.
Rena Loughlin is the EFEP program director. Her association with the organization began 12 year ago when she volunteered at Camp Achieve and met her future husband and camp counselor, Mike Loughlin of Plymouth. His seizures were the result of viral encephalitis caused by a mosquito bite, Rena is eager to increase public attention of the affliction in her husband’s community and beyond.
One in 26 people will develop a seizure disorder at some point in their lives, and Mike Loughlin’s story is as unique as any other when it comes to how and when the seizures started, as well as what diagnosis ad treatment were provided. Some find success with one or more medications and others from medical or homeopathic procedures.
Local radio personality Nikki Stone’s son, Trevor, was about 10 when he started getting seizures. Nikki’s anxiety grew as she sought an explanation for what was happening to her son and continues as the family looked for solutions.
“When he got his first seizure, nobody was talking about seizures,” said Nikki of Nicholson. “I had a feeling, having heard about them at some point in my life. I posted something on Facebook, and friend a reached out to say that it happened to our son, but they didn’t want anybody to know about it. In fact, they didn’t want to talk about it.”
The stigma that epilepsy is a form of mental illness not only haunts people in remote areas who don’t have access to proper resources or support groups, it can prevent others from seeking help. Epilepsy is not a mental illness but, if not properly treated, can lead to stress and anxiety, depression and mood disorders.
Nikki took Trevor to doctors who were unable to determine from what part of his brain the seizures originated nor what triggered them. The lack of a complete diagnosis is not uncommon when it comes to epilepsy, but there was no way for the Stones to know that.
“They couldn’t give me the answers I wanted, and I didn’t want to just try a medicine,” Nikki recalled. “There are so many different categories of epilepsy, and he didn’t fall into any of them.” In the meantime, Trevor was incurring three or more seizures per week, in addition to sleep walking.
The Stones took a holistic approach and found an expert on detoxing and lymphatic massage, which is more commonly performed on people who have had lymph node surgery to drain excess fluids from the system. Trevor went four months with no seizures or sleepwalking. After three breakthrough seizures, they returned to the massage therapist, who also suggested boosting Trevor’s magnesium level. At 15, he is seizure free.
Nikki was aware of EFEP, and is happy to know that help for her family and others may now be closer. She looks forward to sharing her story with others dealing with epilepsy at one or more of the three scheduled events. “I’m glad that they are coming to the area,” she remarked. “It will be more accessible instead of having to go way down to the valley.”
Mary Loughlin, Rena’s mother, has done some outreach to schools in the area, mostly to help teachers better understand seizures and to provide first aid. Bringing Rena on board has provided some additional manpower and the impetus for expanding their outreach.
“We’re looking to see what kind of interest there is up there in the Foundation and maybe establish a support meeting.” Mary related. She is gathering information now on potential venues and partners in Susquehanna and Wayne counties for an initial meet-and-greet like that planned in Tunkhannock this Saturday.