31 posts tagged “feature”

Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS

Posted June 22nd, 2015 by

Ashleigh (Georgiapeach85) is a little bit different than your typical PatientsLikeMe member – not only is she living with multiple sclerosis, she also a caregiver for her husband Phil, who has been diagnosed with PTS. In her interview, Ashleigh shares her unique perspective gained from her role as a patient and caregiver, and how PatientsLikeMe has helped her to look for a person’s character, not their diagnosis. Read about her journey below.

Hi Ashleigh! Tell us a little about yourself and your husband.
Hi! I am 29 and my husband Phil is 33. We have been married for 9 and a half years, and we have a son who is almost two 🙂 . I was diagnosed with Relapsing Remitting MS in July 2009 just before my 24th birthday. My husband served in the Army Reserves for just over six years and did one tour in Afghanistan in 2002. I met him while he was going through his Med Board and discharge. We met while working at Best Buy – he was Loss Prevention, the ones in the yellow shirts up front – and I was a cashier and bought him a coke on his first day 🙂 . We dated for nine months, were engaged for six, and got married and haven’t looked back!

What was your husband’s PTS diagnosis experience like?
It has been hard as his wife to see him struggle with first acknowledging that he had stronger reactions to small things in life than most people would and that perhaps he should seek outside help and then the struggle to get the care he needs from the VA. He is finally seeing a counselor next week after requesting he be evaluated for PTS a year ago. He has never had insurance other than the VA so has to rely on their lengthy processes for treatment. He was given a preliminary evaluation in March for the claim and was told that he definitely needed to be seen further, but then the VA made no follow up.

One of his manifestations is getting very frustrated very quickly, so I try to make all of his doctor appointments for him so he doesn’t have to deal with the wait times and rudeness from the VA employees. I have spent hours on the phone getting the right forms filled out and referrals done. I am proud of him for not giving up on it and seeing that he needs to learn some situational coping strategies so that we can enjoy life as a family. Phil loves camping and the outdoors where things are peaceful and open, so we belong to a private camping club and he loves to take our son and dog up there to get away.

You have a unique perspective as both an MS patient and a caregiver for your husband. Can you speak about your role as a caregiver and some of the challenges you face?
The biggest challenge I face is remembering his reactions to crowds and loud stimulating environments when we are choosing where to go. We have had to leave restaurants because they have been so busy and crowded just waiting for a table that he gets very panicked and apprehensive about being able to get to an exit quickly. He does just fine most places, but crowds and small areas stress him out. I handle making all of my appointments for my MS and his for his medical needs so it can be stressful sometimes while trying to work full time and be a mom.

How has PatientsLikeMe helped you expand your role as a caregiver?
I am just exploring the Post-Traumatic Stress section to see what others are experiencing. I never even thought about getting support for being a caregiver for Phil, I just always assumed he was the only one with caregiving responsibilities for me, but I see that I need to learn what I can about what he is going through so that I can give back the support he has given me over the years and through my diagnosis. Just as I want to be open about my MS, but don’t want it to define me as a person, Phil wants to learn to address his experience in Afghanistan and how he reacts to situations outside his control, but doesn’t want to be defined by a label of PTS. PatientsLikeMe has helped me to look for a person’s character, not their diagnosis. I have met many wonderful people and it is a great relief to know I can log on and vent or seek guidance from people all over the world.

What has been the most helpful part of the PatientsLikeMe site with regards to your MS?
Well I found the best neurologist ever through the site by looking up people who were on Low-Dose Naltrexone for their MS (which is an off-label prescription my former neurologist thought was not worth pursuing), then I sorted by those geographically closest to me, and I sent them a private message as to who prescribed them LDN. One of the members gave me Dr. English’s name at the MS Center of Atlanta, and that center has been a godsend for the care and advancements I have been exposed to. In a similar circumstance, I have made a new friend when a lady two years older than me found me under a search for those in her area and through messaging we found out that her son and mine were born on the same day, just one year apart! She lives 10 minutes away and Phil and I have become friends with her and her husband and that has been so great to have a female friend my age, with MS, and with a young child. Beyond the connections, being able to search for a medication and seeing how it is working for others and their reviews has been immensely helpful.

What’s one piece of advice you have for other caregivers who are also managing their own chronic conditions?
Just because there might not be a cure doesn’t mean you can’t learn a lot about life and yourself in the journey for caring for someone you love. Learn to take the good days with the bad and be thankful for life and being around to give support. In my case, I care for my spouse whom I love with all my heart and will be with for the rest of our lives. You have to view the big picture when you get caught up in the stress of day-to-day or certain circumstances, it’s the only perspective you can take when you’re in it for the long haul 🙂 . Also, don’t feel guilty when you need to take a break for yourself, you are only good for others when you have charged yourself up.

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A bold choice to fight epilepsy

Posted May 6th, 2015 by

As originally seen on the Tampa General Hospital News Center website

It was scary enough for Letitia Browne-James’ parents to witness their child’s epileptic seizures. But they were also frightened when a doctor suggested brain surgery for their 12-year-old.

“My parents said ‘no way,’” Browne-James said. “It was a very scary thought.”

They tried medications, the first step for most of the more than three million U.S. epilepsy patients. But Letitia, like almost a third of patients with epilepsy, could not find a medication that worked. And so for more than 20 years, Letitia fought a losing battle against epileptic seizures that slowly eroded her quality of life.

Finally, at age 31 and desperate for a cure, Letitia took that final dramatic step: brain surgery. This is the story of her journey to become seizure-free.

For thousands of epilepsy patients, brain surgery can be the best option to end seizures. But for these patients with uncontrolled seizures, Browne-James’ experience is typical. Most who eventually have surgery wait 15 to 18 years after diagnosis.

Researchers estimate that well over 100,000 epilepsy patients are good candidates for surgery. But each year, only about 3,000 receive it.

“Surgery is the most dramatic thing you can do to treat epilepsy,” said Dr. Selim Benbadis, director of the Comprehensive Epilepsy Program at Tampa General and University of South Florida. “But these misconceptions exist. We see patients all the time who say, “Oh, my neurologist said, ‘Don’t do that. That’s a last resort before you die.’ “

For many patients, the risk of uncontrolled seizures is higher than surgery itself, Benbadis said. Two recent studies found most patients were seizure-free afterwards.

“If things aren’t working, there is a next step,” said Benbadis, also a professor of neurology at the USF Health Morsani College of Medicine. “Get to an epilepsy center, preferably Level IV, and see what’s causing your seizures and what your treatment options are.”

Patients who visit such a center may even discover they don’t have epilepsy.  Up to one-third of them are misdiagnosed.

***

Browne-James, who lives in Orlando, had her first seizure when she was six months old – and then not again until she was 10. She was diagnosed with epilepsy, an electrical disturbance in the brain that causes seizures. She tried one medication, then another.

But at least once a month, she would have a seizure.

She chafed against the limits that came with epilepsy. She wasn’t allowed to go swimming. Or play too far from home.

She feared having a seizure in school or in church, while she was acting or dancing on stage, or, as she got older, on a date. When she met her future husband, Jonah James, Jr., through mutual friends, she told him about the disease right away.

She worried about her wedding day.

“I prayed really hard, just asking God to allow me to let me make it through that day without having a seizure,” she said.

Her seizures gradually got worse, occurring at least once a week. Now a counselor, she worried about having a seizure in front of a client.

Browne-James wasn’t able to drive. She lost a tooth. She cut her knee so badly that it required stitches and left a sprawling scar. She lost count of the cuts and bruises and hospital visits, all caused by seizures she couldn’t remember.

She tried more medications, and grew increasingly frustrated. About three years ago, Browne-James joined a website that has an epilepsy forum and began to talk with other patients.

The website, called PatientsLikeMe, became her lifeline. It prompted her to find an Orlando neurologist who specializes in epilepsy, called an epileptologist. She learned about brain surgery. Her new doctor gave her the names of three hospitals in Florida where the surgery is performed.

When she called the first one, the doctor there said the hospital could perform her surgery. But he told her she would be better off with a center that performs the surgery more often. She said he recommended Dr. Fernando Vale, surgical director of Tampa General’s epilepsy program and vice chair of USF Health’s Department of Neurosurgery and Brain Repair. Tampa General is the busiest epilepsy surgery center in Florida.

***

Browne-James underwent an extensive evaluation to see whether surgery would help her.  Doctors like Benbadis can identify what part of the brain the seizures come from and evaluate whether it controls any essential cognitive functions.  They can also see which side of the brain is dominant.

“We need to educate patients and physicians more,” said Dr. Vale. “It’s still delicate surgery, don’t get me wrong, but people talk about surgery as scary, how it will disfigure them. And there are misconceptions among neurologists. We are trying to reduce these fears and reassure patients it’s a safe operation.”

The extensive neurological testing and use of two-inch long “keyhole” incisions can help reduce those fears, he said. As the day of the surgery grew closer, Browne-James wasn’t scared.

“Everyone thought I was crazy because I was very excited and counting down the days to brain surgery,” she said.

Dr. Vale removed a tiny piece of Browne-James’ brain, about the size of a sugar cube.  Browne-James marveled at how small the scar was.

She hasn’t had a seizure since. And her cognitive abilities are fine; she’s now working on  her PhD.

Since her surgery, Browne-James has become an outspoken patient advocate. She’s made a video for PatientsLikeMe and frequently speaks with patients and medical researchers about the need for patients to be informed about their care.

One of those patients was an 11-year-old girl.  The girl went on to have surgery and has been seizure-free since.

“She doesn’t have to grow up like I did,” Browne-James said. “Living with epilepsy and planning her life around it.”

For more information about the Comprehensive Epilepsy Program at Tampa General Hospital, contact vkelley@tgh.org or call (813) 844-4675.

Story by Lisa Greene, video and photos by Daniel Wallace, Tampa General News, Friday, April 17, 2015.

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