|A monthly epilepsy support group at Sunrise Hospital in Las Vegas has filled a huge void for those affected directly or indirectly by a very confusing and frightening disorder. The group meets at 5:30 p.m. at Sunrise on the second Wednesday of each month.
The war in the Middle East has gone on for more than a decade. The injuries and deaths in battles both in Iraq and Afghanistan have been in the thousands in what wasn’t supposed to have been as significant.
Whether it was right or wrong to go into the Middle East under President George Bush is now not as important as the damage the wars have produced.
Because of my personal history as it relates to epilepsy and my own victory over the disorder thanks to brain surgery I underwent Dec. 6, 1994 at Scripps Green Hospital in La Jolla, Calif., a recent press release caught my attention.
The release stated that the hundreds of thousands of veterans returning from the Middle East are suffering from TBI, otherwise known as traumatic brain injury. In fact, the numbers are so significant that hundreds of thousands of veterans returning from war in the Middle East will develop epilepsy.
I also developed epilepsy thanks to a mosquito bite back in the early 1950s when I was an infant. Rather than becoming the victim of a war, my own struggle was the result of a mosquito bite carrying the encephalitis virus which damaged my brain.
Ultimately, I would suffer from epilepsy until being cured of the disorder at Scripps Hospital Dec. 6, 1994 when doctors cured me of a long battle. The seizures I suffered for more than 35 years were eliminated from my life thanks to doctors including neurologist Andy Aung and brain surgery Thomas Waltz.
However, while my battle was won at Scripps, I suffered from a major void when returning to Las Vegas. I didn’t have a neurologist in Las Vegas and that I knew of, there was no epilepsy support group to help me on what would end up being a two-year recovery period.
When we returned from Scripps on Dec. 13, 1994, I didn’t know of any support group. We were scared to death of the ultimate outcome considering that there really wasn’t any help for people (a) with epilepsy or (b) recovering from brain surgery to correct the disorder.
That big void has been corrected thanks to the arrival of neurologist Dr. Samir Bangalore who came here from Chicago; and Nurse Lisa Frazier, who together have combined for the past several years to provide a safe haven for epileptics and their families during monthly support groups at Sunrise Hospital in Las Vegas.
We meet on the second Wednesday of each month at Sunrise beginning at 5:30 p.m. The fourth annual Epilepsy Conference was presented recently at Del Sol High School in Las Vegas illustrating just how far things have come in the past decade when talking about epilepsy support groups in Southern Nevada.
We no longer have this massive void in Southern Nevada thanks to Dr. Bangalore and Lisa Frazier. There is help for those suffering from the mysterious effects of epilepsy in Southern Nevada. Considering the injuries from the wars in Afghanistan and Iraq, the timing could not have been better.
The testimonials from the support group meetings in Las Vegas are numerous. We meet and we discuss what is on our minds whether we’re affected directly or indirectly by epilepsy.
Among those who attend the support meetings is Dodie Scroppo, whose daughter has epilepsy.
“I honestly have not been too many times, but all of the times that we have come, we have felt very welcome,” she said. “My daughter started having seizures as a baby. She had eight in one day; then continued to have 2 to 3 a day for a month. We finally were able to get them controlled with two high doses of two different medications. When things settled down a little bit, I did get online and found some support through the epilepsy foundation website. Mind you, this was in 1998 and computers have come a long way since then. It was helpful, but every time we went through another hospital stay or medicine change (which is just down right brutal for the patient and everyone in their family!) I felt somewhat alone.’
Epilepsy has a habit of leaving those affected feeling lonely. A support group usually helps correct that.
“My daughter is now 13,” said Mrs. Scroppo “.I believe she was 10 or 11 the first time we went to a meeting. Her eyes lit up when she heard other people speaking. On the ride home is when I realized how much time I had focused on her taking her medicine twice a day and how little I had focused on "epilepsy". In the car on the way home from our first visit to the support group, Bella turned to me and said, "So. Do I have ... how do you say it? ... 'Epilepsy'?”
That was a great question.
“That is when it hit me,” Mrs. Scroppo said. “.I had never, in ten years, ever sat down and told her about her diagnosis. I had talked to her about her seizures and about the importance of taking her medicine on time twice a day. I had told her that there are a lot of people who need to take medicine every day, but I had never told her what epilepsy is or how many other people have it.
“I did not realize how much I had isolated her from other people who face the same issues that she does. And I did not realize how much she needs contact with other people with epilepsy until that day when she met people who take the same medications she takes. When I talk with her now about the support group, I can tell that it is a place that she really feels like she is where she belongs. She relaxes and feels confident in meeting other people there. She loves to be able to talk about her illness and her medications and to talk with people who understand.”
No matter what the challenge, a support group is invaluable.
“As Bella's mother and primary caregiver, the support group is also good for me.,” Mrs. Scroppo added. “There are other caregivers there and there are questions and answers and simple conversations that help me out. Epilepsy is a very complicated condition and there are no simple answers. Sometimes I feel like I leave with more questions than answers, but I leave with new ideas. And sometimes I leave with the knowledge that I have been able to shed some light on someone else's situation. I have not given up entirely on the idea for surgery for my daughter, be it the retractive surgery or the VNS implant and it is interesting to me to meet people who have gone through these procedures.”
For all involved now, an epilepsy support group is a wonderful addition to Las Vegas where help wasn’t so available year ago.
“All in all, this support group is a place to meet people who truly understand what we have been going through,” Mrs. Scroppo added. “The people who come may not have answers, but they do have big hearts and can share in the frustration with the seizures themselves, the causes (known or unknown) and the side effects of the medication. I am so happy to see the group continue to grow and I look forward to the Las Vegas Valley finally having full support with all newcomers with epilepsy.”
In my case, I have learned from our support group more than 15 years after being cured of epilepsy. Whether it’s the disorder of the surgery, I have found a home and many answers with the group.
Now that it has been determined that the wars in the Middle East will ultimately result in more cases of epilepsy, it’s good to know that help is available in a city that seemed void of assistance in the past. Considering that November is Epilepsy Support Month; and also considering that those suffering from epilepsy now have help in Southern Nevada, it is evident that great strides have been made in a city that lacked such help only a few years ago.
Further information regarding Dr. Bangalore and The Nevada Neurosciences Institute in Las Vegas can be found by calling 702-731-8115; or by emailing firstname.lastname@example.org; or email@example.com.
The group meets on the second Wednesday of each month at Sunrise Hospital beginning at 5:30 p.m.