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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“Don’t go it alone” – IPF member Christine shares about her health journey

Posted April 24th, 2015 by

Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below, read what Christine shared about her diagnosis, progression and thoughts on living with IPF.

Can you share a bit about your diagnosis experience? We’ve heard from many members that finding an official diagnosis isn’t always easy. What that true for you, too? 

Mostly no. In March 2009, I contracted pneumonia back to back within 8 weeks. It was around the time when the swine flu became a big deal, and I had visited Cancun, Mexico that year. I wasn’t necessarily in great health but fairly healthy. I had always attributed my shortness of breath to me being overweight. Because of the pneumonia, a CT scan was ordered. Then a bronchoscopy and finally a video assisted lung biopsy. I was diagnosed however right after the bronchoscopy. I started exhibiting shortness of breath symptoms in 2001. Even went through a series of PFTs at the time but was given an inhaler and told to lose weight. Ironically I didn’t start to suffer from REAL shortness of breath until after the diagnosis. Perhaps I had an exacerbation when sick with pneumonia. 

How has your IPF progressed over the past five years?

To tell you the truth, I really don’t know. I figured the doctor would tell me if there was an exacerbation or not. No news is good news? I do know that my disease had stabilized within 2 years because I was “kicked out” of the lung transplant program so to speak. I no longer needed to see the transplant team doctors however was recommended to still see my pulmonologist which I did. It was only the diagnosis of pulmonary hypertension (in October 2013) that the option of lung transplant is back on the table. I know I need to know this information and will ask my pulmonologist how my PF has progressed when I see her this month. I was only using oxygen at night until March 2013. Then I started using it full time. My liters per minute (LPM) has increased since then too (from 2-4 at rest and 4-6/10 on exertion).

Take us through a typical day in your life – how are you managing your IPF?

I officially retired from my job December 2014. I have up days and down days. Every morning I open my eyes, I thank God! I attend pulmonary rehabilitation (PR) twice a week (Tuesdays and Thursdays). I used to attend a yoga class given by the PR until it was cancelled. I hope they bring it back soon because it brings me much needed peace and helps me breath better. I try to be as “normal” as possible. I cook, clean, spend time with family and friends. I also help take care of my 5-year old twin grandsons for about 3 hours every day after school. I run errands; post office, dry cleaners, etc. Sometimes I go to the doctor by myself but most times I ask for someone to go with me; just to have another set of eyes and ears. I rely heavily on my support system both in person and on-line.

Since it looks like a lung transplant might be back on the table for you, can you tell us a little about what the experience has been like?

It is a very exhausting experience. I’m being evaluated by three different centers (University of Pittsburgh Medical Center, Temple University and New York Columbia Presbyterian). Every other week, I’m changing my mind. Traveling back and forth, making appointments, getting all the tests done can be extremely stressful. I was initially with the University of Pennsylvania lung transplant center. I was rejected by them because of esophageal issues. I was so defeated that I went home and cried and said I can’t do this anymore. But I guess God has something else in store for me. I was referred to UPMC and my cousin had a double lung transplant at Temple. One of my “rehabilitation buddies” went to NYCP and referred them to me. I am a part of the NYCP program and UPMC and Temple are in the process of testing me. I know that lung transplant is not a cure but an option. It’s trading one set of challenges for another. It is good to see some people that I have met on-line over the years thrive with transplant.

How have others in the IPF community on PatientsLikeMe helped support your journey?

Words cannot express how I feel about the IPF community! As I mentioned earlier, they are an important part of my inspiration. Their honesty, love, courage and encouragement help keep me going when I think I can’t go on anymore. I pray for our individual and collective healing on a daily basis. 

You post a bunch to the “Today’s Thought” thread in the forum – what is one thought you’d share with someone who has recently been diagnosed with IPF?

DON’T GO IT ALONE!!!! Please reach out to family and friends. Stay connected even if it’s online. Research face-to-face groups on the Pulmonary Fibrosis Foundation website. Talk to a therapist, priest, rabbi, etc. This can be a dark, lonely and scary experience; a rollercoaster ride that’s terrifying and not fun. Remember that you are not alone!!! And there is a whole community of us just waiting with open arms.

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PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS

Posted April 20th, 2015 by

TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent presentation on patient-focused drug development with Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety. Catch up on his journey below.

Hi Tom! Can you share a little about your early symptoms and diagnosis experience?

I think I was very lucky to have a knowledgeable general practitioner – my actual diagnosis only took three months to complete even though I had to see three separate neurologists. My early symptoms started in my right hand with weakness and the atrophy of the thumb muscle – I thought it was carpal tunnel syndrome.

How has your ALS progressed over the past few years?

Thankfully I have been in the category of a slow progressor:

The ALSFRS-R measures activities of daily living (ADL) and global function for patients with Amyotrophic Lateral Sclerosis (ALS). The ALSFRS-R provides a physicians-generated estimate of patient’s degree of functional impairment, which can be evaluated serially to objectively assess any response to treatment or progression of disease.

Description:

  • 12-question scale with 5 possible responses each (0-indicates unable to 4-indicates normal ability)
  • Individual item scores are added to produce a reported score of between 0 = worst and 48 = best

What sort of advocacy efforts have you been involved in since your diagnosis?

  • PatientsLikeMe (PLM) Member since January 2011.
  • Active with the ALS Association (raised over $80,000 to date) – my most current activity.
  • On 8/2/2011, FM 106.7 The Fan (Sports Junkies) hosted an ALS Awareness Day Interview.
  • March 2012: Featured Interview on PatientsLikeMe (PLM) –Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy.
  • April 24-25 2012 Visit to Capitol Hill with Former Neuraltus CEO (Andrew Gengos) – Summary: I think Andrew Gengos (CEO Neuraltus) and I made a good “team” – Both Industry and Patients “partnering” with a consistent message related to Expanded Access and Accelerated Approval for Rare and Life Threatening diseases such as ALS.
  • Raised over $30,000 for a collaboration between ALS Treat Us Now and the ALS Therapy Development Institute (ALSTDI) and rode the last 15 miles of the ALSTDI Tri-State Trek in July 2012.
  • Presentation made to the FDA CDER on 8/24/2012.

You’re a 3-star data donor on PatientsLikeMe – what do you find helpful about tracking your health on the site?

Because of this site, I think I have the most complete documentation of my disease progression in treatments than anyone in the health industry. It is a great tool and has been unbelievably helpful to me over the last four years. 

Finally, congratulations on your 33-year anniversary! As a father and husband, what’s one thing you’d like to share with the community about ALS and family relationships?

At the end of the day, given all the challenges those of us with ALS face – nothing is more important than your family relationships and the love you share.

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“ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS

Posted March 30th, 2015 by

That’s what SuperScout likes to tell people when explaining her personal motto. She was diagnosed in 2009, and in a recent interview, she explained how she takes her life one day, and sometimes one hour, at a time. In her interview, she broke down what goes on during a typical visit to her ALS clinic, and shared how technology has been simultaneously frustrating and extremely helpful. Learn about her journey below.

When did you first experience symptoms of ALS?

In August 2008, I was attending a Girl Scout event. As we recited the Promise, I noticed my fingers weren’t making the sign correctly. Over the next few months, I began to lose the fine motor skills in my right hand. Writing was hard, & I started using my left hand for most things. I thought I had some form of carpal tunnel. I had NO pain, so I wasn’t concerned. In December 2008, I went to my family doctor for my annual check-up. I told him my problems & he sent me for an electroencephalogram (EEG). That began the series of tests that eventually led to my diagnosis in April 2009.

How did you feel after being officially diagnosed? And what was the first thing that went through your mind?

I don’t think I will ever forget that day. I suspected something unusual was going to happen because the technician at my second EEG commented that the neurologist must find my case interesting because normally, it’s difficult to get an appointment with him. He entered the exam room, sat down, and said, “I have bad news for you. You have Lou Gehrig’s Disease.” I was stunned, and asked if it would affect my longevity. He said yes, but couldn’t tell me how much. He asked if I had any questions, but I didn’t because I didn’t know much about it. Sure, I had heard of it, but didn’t know what it would do to me. I went home, and looked on the Internet for information on ALS. It was scary. The first thing through my mind was how it would change my life and that of my family. I was used to doing for others, now they would need to do for me.

You tell people “ALS is not for sissies.” Can you elaborate on that?

A sissy is defined as someone who is timid or cowardly. No one who has ALS can fit that definition. We all know it will shorten our life, and rob us of many functions we once took for granted. I really like the PSA Angela Lansbury did for ALS in 2008. She’s sitting on a stool, and a gun is fired. As the bullet races toward her, she describes what ALS does to the body, and ends by saying “There’s nothing you can do to stop it.” She asks for donations for the ALS Association (ALSA) stating that with this help those with ALS can do this: She rises and avoids the oncoming bullet. We all see the bullet, yet can’t do anything to stop it. Unlike other serious diseases, there are NO options for a treatment that will cure this disease that’s been described as horrific. However, every day we People with ALS (PALS) are fighting the daily battle to stay positive. Sometimes, it’s easy, sometimes, it’s hard. You take it one day at a time, or even just one hour at a time. That makes us BRAVE, and not sissies.

Take us through a typical visit to your ALS clinic – what’s the experience like?

Every 3 months, I visit the ALS clinic at Penn State Hershey Medical Center. Once my weight is checked, I’m taken to an exam room, then the team of specialists each stop in to see me. In addition to the neurologist, I see a respiratory therapist, nurse, ALS representative, MDA representative, speech therapist, dietician, occupational therapist, physical therapist, social worker, & a pastoral care minister. They each make recommendations to help me have the best quality of life with ALS as possible. My family members are asked if they have any needs. Each room has a sign – “Have we answered all your questions?” About 1 week after my visit, I receive in the mail a summary of my visit with their recommendations. Prior to the visit, I also complete a Quality of Life survey, similar to the one on this website. Although lengthy (around 3 1/2 hours), I enjoy my visits because each person makes me feel important and they truly care about me.

How has technology helped you with your communication?

When I began using my Eyegaze Edge, I found it frustrating, but gradually got better at not moving my head and was able to be successful. Now, it is my sole means of communication. Before my caregiver arrives in the morning, I type out for her what I want for my meals, what channels I want to watch on TV, and any special information. My son says I sound like Charlie Brown’s teacher when I talk, so using my device is a necessity if I want to communicate. We even take it to Sunday School, so I can participate in our class discussions. My most favorite thing to do is connect to the internet. Sending emails is easy, and I go on Facebook, play games, read, Skype, shop, and do whatever I’m in the mood for. Once, when the camera broke, I was without it for a few days and I really missed it. I wound up grunting “Yes” or “No” to questions which was frustrating. Using technology to connect to others makes me feel I still have a purpose in life, and I have something worthwhile to contribute.

Finally, what’s the most positive surprise you’ve learned while living with ALS?

The most positive surprise I’ve learned while living with ALS is that I have more people thinking about me, and supporting me with their prayers, than I expected. I learned this during the ALS Ice Bucket Challenge. I began to see videos posted on my Facebook timeline of people participating in the Challenge in my honor. It warmed my heart to see them. They featured friends, former work colleagues, and some fellow Girl Scout volunteers. Many said how I’ve inspired them with my smile. It was never my intention to be an inspiration, but just to cope with ALS the best way I knew, with my faith in God and a sense of humor. Due to the Ice Bucket Challenge, the world now knew more about ALS, and money will be used to find a treatment and cure for ALS. I feel hopeful for the first time since my diagnosis.

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“I am not alone in this” – PatientsLikeMe member Rikwood55 shares his journey with lung cancer

Posted March 23rd, 2015 by

New member (and New Zealander) Rikwood55 was diagnosed at age 58 with non-small cell lung carcinoma (stage 4), and he said he joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Rick took part in a clinical trial, and is now tolerating the immunotherapy treatment well. His scans are looking good, and he sums it up this way:

“Five rounds of Carboplatin Chemo was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.”

Read Rick’s interview below and share your own experiences.

Tell us a little bit about yourself, Rick.

I am Rick, and I was diagnosed at age 58 with NSCLC stage 4 metastasis. I am a New Zealand-born resident currently receiving immunotherapy treatment in a clinical trial every 3 weeks at Auckland Hospital. I have received 14 treatments to date. Scan results have been good and I am tolerating the treatment well. I have joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Please, no clinical specific info, which would in any way compromise study results. Let’s talk about living day to day…I think you’ll know what I mean.

You were diagnosed about 2 years ago – what went through your mind after your diagnosis?

Diagnosis day was a tough day. Mentally paralyzing. No soft landing. I dealt with it as best as I could. Fortunately my beautiful wife was there for me. 

You’re a brand-new member of PatientsLikeMe – welcome! What do you think of the community and site so far? 

Thank you for your ‘new member’ welcome to PatientsLikeMe. What I have seen so far, this site looks to me to be very impressive, I found the section on sleep very reassuring. Insomnia is a big issue for me. I see now from your research data that I am not alone in this.

On your profile, you’ve noted that one of your interests is in clinical trials. What about clinical trials makes you passionate about them?

I do not think I am passionate about clinical trials per se. However, I am very enthusiastic about the immunotherapy study treatment that I am fortunate to currently be on. It has given me hope. A sense of hopelessness was never far from my mind in the first year after diagnosis. Five rounds of carboplatin chemotherapy was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.

Finally, what is one thing you’ve learned over the past two years since your diagnosis that you’d like to share with the lung cancer community?

Maybe one small way that I can try and say thanks to the cancer researchers, biotechnicians, study administrators and clinical care staff is to show support and encouragement for the groundbreaking work they are doing. They deserve all the flag waving acknowledgment possible for giving me back hope.

To paraphrase Mel Bernstein/Harris Yulin in Scarface, (1983), “Everyday above ground is a good day.”

Cheers!

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“I am slowly building my self-esteem “ – PatientsLikeMe member SuperChick shares about her journey with PTSD

Posted March 4th, 2015 by

PatientsLikeMe member SuperChick is a veteran living with post traumatic stress disorder (PTSD), and her story is one of learning to cope with emotions and frustrations. She’s living proof that things can get better – she’s a loving mother of two, has a great husband and is managing several other mental health conditions. Below, she shared about the sexual abuse she experienced while serving in the military and explained how her previous husband physically assaulted her. Superchick also describes the symptoms of her PTSD and how the community on PatientsLikeMe has been “a huge help” to her. Read about her journey below.

Note: SuperChick shares about her story of abuse, which may be triggering.

Can you speak a little about your PTSD and what led to your diagnosis in 1986?

I was originally diagnosed with PTSD after being raped while I was in the military. I believe I was more susceptible because I had been molested as a child and didn’t have good family support or dynamics. I worked through it, but was diagnosed again in 2007 after leaving a severely abusive marriage, where I was raped multiple times and choked at least twice. I was emotionally abused and didn’t even realize it was abuse. I stayed for fourteen years trying to change myself because my ex-husband had convinced me I was the problem and couldn’t do anything right. It destroyed my self-esteem and any healthy coping skills I had.

What are some of the symptoms you experience because of your PTSD?

Since being diagnosed with PTSD the second time, I have numbed my emotions, I experience anxiety, and I have trouble falling and staying asleep even though I may be thoroughly exhausted and am taking medications for sleep. Sometimes I am afraid to go to sleep. I sometimes have nightmares, although not nearly as often as I used to. I have difficulty fully trusting my current husband, or people in general for that matter, even though I know he would never harm me and treats me with tremendous respect. I have suffered from a very low self-esteem and for a long time felt responsible for the trauma. I react more intensely to triggering situations than other people would. I am slowly building my self-esteem, but that is still a struggle for me.

You’ve got two wonderful children – how does PTSD affect your family life?

Because my children spend half their time with their father, I worry about them when they’re with him because I know how abusive he can be. I worry about them being sexually abused or harmed and am very protective of them around anyone I don’t know very well. I’m afraid of my daughter becoming involved in abusive relationships when she grows older and my son becoming an abuser. In a positive sense, I am very affectionate and make time to listen to them and engage in activities I know they enjoy because I want them to experience healthy love. I am remarried to a man who truly loves and respects me. My husband and I try to model a healthy relationship for them.

It’s hard for my husband and me, though. The fact that I still have to be involved with my ex-husband and am told over and over again by the court system, child protective services, and all the mediators we’ve worked with that I have to get along with him makes things very difficult. It minimizes or completely dismisses the trauma I’ve experienced. My husband wants to protect me, and this makes him feel frustrated and powerless. There is no way to get along with a narcissist and abuser. I want to move on and not have him as the focus of our lives, but then something happens and it starts all over again. Sometimes my husband feels shut down when he suggests something I have already tried and found to be futile.

I’ve come to realize that while I have been dealing with all of this for over seven years, he came into this halfway through and is in a different place than I am, having to deal with emotions and frustrations I’ve already experienced and dealt with. He is beginning to understand that his approach can sometimes trigger my symptoms, so when he feels like I’m shutting him down I am actually trying not to go back to that pain. It’s hard in that respect for me to be there for him. We plan to go back to family therapy to help develop a healthier focus for our lives. We’ve been dealing with adversity that has out of necessity been the major focus of our lives, but now we need to move on.

How have you learned to live and cope with your PTSD?

I’ve been in therapy since before I left my marriage, and finally found a therapist who has helped me overcome many of the symptoms of PTSD through EMDR (eye movement desensitization and reprocessing), which helps change the way I react to the memories. For the most part, I am able to remember the trauma without it bothering me. I still experience triggers, but am able to process the emotions using cognitive behavioral therapy skills and journaling. When I am triggered, I make sure I take care of myself through prayer, talking with my husband and therapist, and doing things that help me relax, ground me, and fully engage my mind, like playing my flute and piano.

The community on PatientsLikeMe has been a huge help. I’ve been able to get support from people all over who have been through what I was going through, and that has helped me cope and make better decisions about my health. I was able to see what my main issues were through the mood map and monitor the effectiveness of my medications. There were many times the PatientsLikeMe community were far more helpful than my doctor.

You’re also living with bipolar II, depression and a few others conditions – how do these affect each other?

I believe the PTSD triggered the bipolar, because I never had symptoms until after I left my marriage and had symptoms of severe PTSD. As I look at symptoms of PTSD, it explains a lot of behaviors I didn’t fully understand, like self-harm, which began as I started to talk about and process the trauma of long-term sexual abuse in my previous marriage. As I’ve worked through many of the issues causing the PTSD, I’ve found that I no longer experience the symptoms of bipolar and have been able to decrease my medications. If I do experience depression now, it is short-lived and related to a specific experience.

As a veteran, what is one special message you’d send to your fellow veterans also living with PTSD?

I think veterans have experiences that only people who have been in the military can understand. Military units are like family, and I find I miss that sense of community now that I’m retired. Meeting with other veterans, especially those with shared experiences of PTSD, may be helpful because those people are more likely to relate well.

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“You can get better” – PatientsLikeMe member jeffperry1134 shares about his journey with PTSD

Posted February 12th, 2015 by

Many veterans are a part of the PTSD community on PatientsLikeMe, and recently, jeffperry1134 spoke about his everyday life after returning home from military service. In his interview, he touched upon his deployment to Somalia in the early 1990s, and how his memories of Africa cause daily symptoms like anxiety, hallucinations and nightmares. But despite everything, Jeff remains upbeat and reminds us that there is always hope. Scroll down to read what he had to say.

Note: the account below is graphic, which may be triggering.

Can you tell us a little about your military service and your early experiences with PTSD?

I entered the military in the Army in July 1990 as a heavy wheeled mechanic. I went through basic training and AIT at Ft. Jackson, SC. I went to my first permanent duty station in December in Mannheim, Germany. I was assigned to a Chinook helicopter unit. My unit was very relaxed and we got along well. As soon as the war broke out we received our deployment orders. We returned home in July from deployment. My PTSD was early onset after returning from Desert Storm. I experienced nightmares, depression, alcohol abuse and drug abuse. At the time I was a 19 year old alone in Germany away from my family struggling with this mental illness. My supervisors were able to help me hide my problems well and it was not discovered at that time. I feared being singled out for having these problems. Three days before it was my time to PCS stateside our company was deployed again, this time we were going to Somalia. I was told I could leave but I felt guilty so I volunteered to stay and deploy with my teammates. We deployed in November 1992 and returned in June 1993. During my time in Somalia it was rough. During the deployment my job was perimeter guard duty and body remover. During the deployment I used local drugs of Khat and Opium Poppies to control the symptoms of my illness. After returning from Somalia not only did I have the symptoms that I had earlier but now I was hallucinating hearing voices, smelling smells and seeing flashes. I went stateside a week after we returned. I went to Ft. Leonard Wood, MO in an engineer unit that was strict. I made a huge impression with my skills as a mechanic and a soldier so when I was having problems my superiors hid it for me to keep me out of trouble. I did get in trouble once after a night of heavy drinking and smoking marijuana and was given an article-15 for being drunk on duty. Before that day I had still considered myself as a career soldier and I decided then that I was not going to re-enlist. I spent the rest of my military time waiting to get out and finally July 1994 came and I was out and had a job at a local car dealership as a mechanic. After working a while I got into a verbal confrontation that turned physical with the business owner and had to be removed by the police from the dealership. After that my thinking became bizarre and very hyper-vigilant. I took newspaper clippings and taped them to a door so it would motivate me to exercise harder and be ready if I were ever in a life or death situation. At the time I was working with a great therapist and she did wonders for me keeping me stable. She convinced me to take my medications and stop drinking daily.

What were your feelings after being officially diagnosed? 

I was blown away when I was diagnosed in 1995 after a suicide attempt that ended up with me being hospitalized on a psych unit for a week. My sister walked in on me at my apartment with a loaded gun in my mouth. I was resistant to treatment or even acknowledging that I had this illness. I was linked up with a therapist and psychiatrist before leaving the hospital.

What are some of the symptoms you experience on a daily basis?

On a daily basis I usually deal with a lot of anxiety, some depression, occasional hallucinations and nightmares. On a bad day I will have sensory hallucinations with me smelling dead bodies, burning flesh or cordite. Usually when that happens I get physically sick.

You recently completed the Mood Map Survey on your PatientsLikeMe profile – what have you learned about your PTSD from your tracking tools?

I learned that my PTSD is not as well managed as I would like it. It made me press my doctor to give me an antipsychotic medication and I have a new therapist at the VA that is working hard to help me identify when my symptoms are becoming worse.

By sharing your story, what do you hope to teach others about PTSD?

I just wanted to show that you can get better and that there is hope and that they can get through it.

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“The human spirit is more resilient than we think” – PatientsLikeMe member mmsan66 shares her journey with ALS

Posted January 29th, 2015 by

PatientsLikeMe member mmsan66 was diagnosed with ALS back in 2008, but she’s been fortunate to experience an unusually slow progression, which currently affects only her legs. As a college professor, financial planner and ALS advocate, she raises awareness through her work with the Massachusetts Chapter of the ALS Association. She even finds time to visit places like the Grand Canyon, and she shared all about her life in a PatientsLikeMe interview. Read below to learn about her personal journey. 

What was your diagnosis experience like? What were some of your initial symptoms?

I was diagnosed in 2008 at the age of 66 but, looking back, had definitely exhibited symptoms in 2007 or earlier. I had retired a few years prior, after a long career in Human Resource Management that included positions in the fields of health care, the Federal government, higher education (Northeastern University), and high technology (the former Digital Equipment Corporation).  But, rather than slow down and enjoy retirement, I started a second career in tax and financial planning. I became an IRS Enrolled Agent (EA), earned a Certificate in Financial Planning, and obtained my securities and insurance licenses.  I started my own business as a tax and financial advisor (Ames Hill Tax Services) and also began teaching undergraduate courses in Finance, Accounting, and Investments as an Adjunct Instructor at several local colleges and universities.

I definitely noticed a change in 2007, when I experienced a number of falls (for no apparent reason), culminating in a fall while on vacation in Florida in which I fractured my left wrist. Upon returning home, I scheduled appointments with several specialists to have my legs checked out and, after a series of neurological tests, received a diagnosis of ALS at the Lahey Clinic in July of 2008. I wasn’t completely stunned, as I had done a lot of internet research on diseases with symptoms similar to mine, but had gradually eliminated them one-by-one as each test result came back negative. However, like all PALS, I was hoping against hope that my suspicions would prove false. The one thing that kept going through my mind in the days following my diagnosis was that my life—— as I knew it—– would soon be over.

How has your ALS progressed over the past few years? 

In 2009, after learning that the average life span of a PALS was 3-5 years after diagnosis, my husband and I decided to sell our home of 36 years rather than modify it. Fortunately, they were in the process of building a luxury apartment complex on a hill in town, and we were able to move into a brand new handicapped-accessible apartment, complete with roll-in shower, and overlooking a pond complete with wildlife.

By 2010 I was no longer able to walk at all, and had to rely solely on a power/ manual wheelchair, as well as a scooter. Although confined to a wheelchair, I still maintain my active tax practice, preparing individual, corporate, and trust tax returns as well as representing my clients at IRS audits. When I realized it would be too difficult to travel to and from the various campuses at which I taught, I applied and was hired as an online instructor by the University of Phoenix, where I’ve been teaching Personal Financial Planning since 2010. At this point in time, after living with the disease for 8 years, still only my legs are affected. Thankfully, I still maintain my upper body strength, and my ability to speak, swallow, breathe, etc. remains completely normal. Somehow, I can’t help but feel that this slow progression might be due in part to the upbeat, positive outlook I continually strive to maintain, and the fact that I keep very busy with my family, clients, students, attending online CPE seminars (to maintain my professional licenses), and participating in ALS fundraising walks.

We read you like to travel – what are some things you’ve done to make traveling easier?

We’ve done some travelling since I’ve been unable to walk, but nothing extensive in the last couple of years. Our last long-distance trip was to Las Vegas, the Grand Canyon and several other National Parks such as Bryce and Zion. At the time, however, I was still able to transfer with my arms from my wheelchair into the passenger seat of our van. Now, since my legs are completely useless, a handicapped van is a necessity.  We will be going to Austin, Texas in October for a niece’s wedding. We’ve found travelling is a lot easier if you call ahead to lay everything on with the airlines. Reserving a wheelchair or a power chair at each destination makes things a lot easier. And, it’s of the utmost importance when making hotel reservations to specify a “wheelchair accessible” room, not just one that’s “handicapped accessible” (a motel that has a roll-in shower is the best!).  Also, contacting local ALS organizations in the areas you plan to visit well in advance can be very beneficial. They can direct you to rental agencies or, better yet, lend you the mobility equipment you will need while you’re there.

Can you tell us a little about your work and advocacy with the Massachusetts Chapter of the ALS Association?

A few years ago, I decided to become involved in ALS Advocacy with the Massachusetts Chapter of the ALS Association. I was invited to speak to groups of scientists at Biogen Idec in Cambridge, MA on the topic of living with ALS, and was interviewed by the Boston Globe and WBUR radio when Biogen discontinued the Dexpramipexole trials. I also attended the NEALS Consortium’s first Clinical Research Learning Institute held in Clearwater, FL in October 2011. There I was fortunate to personally meet many fellow PALS from around the US, as well as prominent researchers and clinicians engaged in the fight against ALS. (I also had the pleasure of meeting Emma Willey from PatientsLikeMe.)

In addition, I have spoken to groups at various other fundraising events sponsored by organizations such as ALSA, the ALS Therapy Development Institute (ALSTDI), etc. and have represented these organizations at ALS Awareness events at Fenway Park. Because of my visibility as a PALS, I was elected to the Board of Directors of the ALS Association’s Mass chapter, and currently serve in the capacity of Secretary. 

What have you learned about yourself that has surprised you and/or your loved ones? 

I think the first and foremost thing I learned, is that the human spirit is more resilient than we think. I would never have imagined that I could be diagnosed with such a terminal disease, and still continue on with my life as best I could, finding pleasure in simple daily activities. We had travelled extensively around the world in the early years of our 47-year marriage (lived in Hong Kong for 2 years) and planned to travel internationally once again once we retired and our daughter embarked on a career of her own. Now, I appreciate just being able to get into our handicapped van and take local day trips with my husband. Never mind viewing the Taj Mahal by moonlight, now an excursion to the grocery store or taking in a local college hockey game is a welcome diversion and takes some planning.

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“Strength will come, somehow, from somewhere” – PatientsLikeMe member Glow4life shares her journey with lung cancer

Posted January 26th, 2015 by

PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life has remained positive, and she’s learned to take every day as it comes and live in the moment. Learn about her journey below and how she shares love and hope whenever she can.

How did you react after getting diagnosed with lung cancer in 2013? What was the diagnosis process like?

I had a routine X-ray in February 2013, after attending A & E with chest pains (which turned out to be nothing). A few days later I received a letter asking me to return in 6 weeks for a follow up X-ray, as there was a suspect area, probably scarring from a previous chest infection but best to check. My general practitioner reassured me it was unlikely to be sinister, if cancer was suspected I’d be looked into immediately. I thought no more about it and returned for the repeat X-ray as scheduled. The following day my GP rang me to tell me there was a tumor on my left lung that required further investigation, and gave me the number to ring for a scan, which took place within a couple of weeks. I asked if this was likely to be cancer, and he told me it almost certainly was. The scan did, in fact, reveal a cancerous tumor, and I was referred for a PET scan and bronchoscopy. On the 27th of June, I was seen by the specialist who gave me the news that adenocarcinoma was confirmed, and had spread to the other lung, and right adrenal gland, and was given an appointment with an oncologist, who would assess appropriate chemotherapy. It’s impossible to describe how this feels, but you know that your life has changed forever. I saw the oncologist on the 7th of July and was offered a course of cisplatin/premetrexed, a course of 4 to 6 treatments, every three weeks, in an attempt to shrink the tumors and prolong life.

I was told my prognosis was terminal, and that with successful chemo, 20 percent of patients survive a maximum of 12 months. If we were shocked before, nothing compared with this, it was like being hit by a wrecking ball. I started my chemo on the 23rd of July and had the fourth session in October, which was followed by a CT scan. This showed that the tumors had shrunk and no further chemo was necessary. A maintenance course of premetrexed was available but not recommended, as the chemo had made me very ill. Since then I have been on watch and wait, every three months, last time extended to four. I go for X-ray and blood tests before my appointment with Dr. Brown, my oncologist. My cancer is stable, though not cured, and my general health is good, as is my quality of life. I do tire very quickly, but then I’m getting on a bit!

You’ve received treatment for your tumors – what’s it like being on a “watch and wait” plan?

Being on ‘watch and wait’ is like having the sword of Damocles hanging over your head, you never know when it might drop. But I try not to dwell on that, it would be wasting the extra time I have been given in pointless worry and speculation. I try to forget about it between visits, and for the most part I do, though I must admit to a certain amount of anxiety in the couple of weeks prior to the next appointment.

How has your day-to-day life changed since being diagnosed and treated for lung cancer? 

Well, I thought the worst possible thing had happened to me and things couldn’t possibly get worse. But I was about to find out different. It’s hard for me to answer this objectively, as 3 months after the diagnosis, and while I was in hospital having my 2nd chemo, my husband Tim was found dead at home, having suffered a cerebral occlusion. Tim was 11 years younger than me, and in perfect health, so the shock was profound, for all of us. I passed the next few months in a fog of chemo and grief, it was the hardest time imaginable, but the days passed and I got through it.

My life has changed beyond all description and I can say with all honesty that living without Tim is much harder than living with cancer. Loneliness is my biggest issue now, and wishing he was here to help me through this, which I know he would wish he was here to do. One thing I did learn was that having a terminal illness doesn’t make us closer to death than anyone else, and that life can be taken from any of us, at any time. So it’s important to take each day as it comes, and make each one count. When I die, nothing will be left unsaid, no actions regretted or opportunities missed.

I fear death much less than I did, while still embracing what life is left to me. We all have a time to leave this world and move on to whatever adventure lies beyond, and I know that the time is coming when Tim and I will be reunited in spirit. I will be sad to leave my beautiful family, but happy that I’ve been given this time in which we’ve all been able to prepare, and make the very most of the chance to let them know how much I love them. And we all have to leave sometime!

What have you learned from using the InstantMe feature on PatientsLikeMe?

What I’ve learned from PatientsLikeMe is that I’m not alone in this, so many of us are dealing with similar issues, and that while cancer is different to each individual, what is the same is that most of us are devastated by the effect it has on our loved ones. It’s so hard to see their sorrow, and know you are the cause and can do nothing to stop it. I’ve also learned that many people are much worse off than I am, having succumbed so much faster, while I am still here and comparatively well. Each time I go for a scan/bloods/chemo, or to oncology I see the waiting room full, and think, so many of us, all with similar fears and trepidation of what is coming our way.

We read that your motto is “Never give up, never give in” – along with that, what else would you say to someone who has been recently diagnosed with lung cancer?

What I would say to anyone recently diagnosed is this: You will wonder how you are ever going to find the strength to cope, how do people do it? But be assured that the strength will come, somehow, from somewhere, and you’ll find your way through. Take one day at a time, and make each one count. Prepare for every eventuality, but never lose hope. Follow good advice, not fads. Try not to look too far ahead and live in the day, or even the moment. Don’t think of yourself as dying from cancer, but as living with it. One of Tim’s favorite sayings, when the times were tough, was “Head up, son” I say that to myself every day.

And don’t Google! You’ll frighten yourself with out-of-date misinformation and meaningless statistics. Listen to the experts.

Finally, share love and hope wherever you can, while you can.

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“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP

Posted January 9th, 2015 by

Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but learned so much more. He shared what it’s like to live with HP, how he uses PatientsLikeMe to learn more about his own health and how the community has helped him to stay inspired in his fight.

Can you share a bit about your chronic HP? Can you explain to our blog followers how it’s different than IPF?

I believe the major difference is that with hypersensitivity pneumonitis there is a cause. If I’m correct there are three forms: acute, subacute and chronic. All are caused by exposure to an antigen that may or may not be identified. In my case, I have chronic hypersensitivity pneumonitis (HP). My specialists have determined that it’s not necessary to identify the antigen since my condition is chronic and cannot be reversed.1

What was your diagnosis process like, and how was it different than what you’ve heard about getting diagnosed with IPF?

Of course I can’t compare how it ”feels” to have HP vs. IPF, and I’m no expert, but I will give you my version of the difference between HP and IPF. First, both are forms of pulmonary fibrosis. With HP, the fibrosis forms primarily higher up in the lungs, and IPF forms in the lower part of the lungs. Air trapping occurs in cHP but not in IPF. I have no idea how this impacts me as a patient, but I’ve included a comparison from Dr. Jeff Swigris.

Apparently another difference is that HP fibrosis is caused by inflammation, whereas IPF is caused by different forms of pro-fibrotic influences. Generally speaking, specialists recommend an anti-inflammatory drug (prednisone) and/or an immunosuppressive such as azathioprine, mycophenolate, cyclosporine, or cyclophosophamide. In my case, my doctor and I agreed on a course of mycophenolate. Initially, it had significant side effects, such as severe fatigue, poor sleep, weight gain and depression. I switched to Myfortic, which is a different brand of mycophenolate, and now the side effects are minimal. I have much more drive and I feel much better! It’s still too early to tell if it will help. My concern is that my pulmonary function test (PFT) results have dropped in the last four months, so I’m concerned that I’m deteriorating. At the moment, I function almost normally. I have a walking routine that includes a 7.5 K walk, which I can complete in an hour. I now require supplemental oxygen for long flights, but I still consider myself lucky!2

You frequently use the InstantMe and Quality of Life tools on PatientsLikeMe – why do you like to use these to donate your data?

I find it’s good to have a record of your health pattern. This can include how you feel daily as well as a record of the medications I’m on. I print out portions of this for my doctors’ appointments and it helps me be well prepared.

How have others in the HP and IPF communities on PatientsLikeMe helped support you on your journey?

My biggest concern is that HP is the “poor cousin” in the PF family! There are very few of us online and therefore it’s difficult to learn as much as I’d like to! Nevertheless, I have learned a lot about shared aspects of PF such as patient care, oxygen therapy and lifestyle issues. I continue to be inspired by those who share this fight with me and I’m always grateful when I’m able to learn something that will help me.

I’ve always told my wife I plan to die of old age! One of my strengths is that I have a great attitude. Participating in platforms like PatientsLikeMe helps me not only learn more, but it fortifies my attitude!

Many people may not know about rare conditions like HP and IPF. If there was one thing you thought someone who doesn’t have a clue should know about HP, what would it be?

That’s a tough question because there is so much more I need to learn before I feel I can address this question. I suppose the key with HP is that if you have developed acute or subacute forms of the disease you may be able to arrest the fibrosis before it progresses too far.

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1 http://nationaljewish.org/Participation-Program-for-Pulmonary-Fibrosis/Community/Blog/Participation-Program-for-Pulmonary-Fibrosis/November-2013/What-is-Chronic-Hypersensitivity-Pneumonitis

2 http://nationaljewish.org/Participation-Program-for-Pulmonary-Fibrosis/Community/Blog/Participation-Program-for-Pulmonary-Fibrosis/November-2013/Some-of-the-nuance-about-cHP


“…about 10,000 baby boomers are turning 65 every day…” – An interview with Dr. Sarika Aggarwal

Posted December 29th, 2014 by

Sarika Aggarwal, M.D. is Executive Vice President and Chief Medical Officer at Fallon Health, and it’s her job to make sure all plan members get appropriate, effective and high-quality care. We caught up with Dr. Aggarwal for an interview, and she talks about how she came to spend the last 26 years practicing medicine in Massachusetts, what the new partnership between Fallon Health and PatientsLikeMe means for members, and a bit about her work—especially her focus on helping seniors stay and get care in their own homes whenever possible.

A bit of background: Dr. Aggarwal graduated from Grant Medical College at Bombay University and then completed her residency at UMass Memorial in Worcester, Massachusetts. Before joining Fallon Health in 2012 as Vice President of NaviCare Clinical Programs, Dr. Aggarwal was Medical Director in the Office of Clinical Integration at UMass Memorial Medical Care and an Assistant Professor of Medicine at UMass Medical School.

Dr. Aggarwal, we know a little bit about your background in India. What made you decide to come to the United States?

My husband had been studying in the U.S. for about six years and went back to India to visit his parents. [That’s when we met, and] … I came to the United States three days after we got married. I finished my fourth year medical school clerkships here before starting my residency program.

What drew you to Fallon Health? How have things been going since you took over the role of Chief Medical Officer?

I was Medical Director of Clinical Integration of an academic health system on the provider side during my last job. I realized with the advent of the accountable care organizations (ACOs) that the providers needed to learn to manage risk and develop health plan capabilities, such as utilization management and population health management capabilities—things that the health plans had mastered for many years.

As Medical Director, I was working closely with Fallon on one of its programs for seniors called NaviCare. When I learned of a position to lead the program, it was the opportunity I was waiting for.

The role of Chief Medical Officer has been challenging but exhilarating. It is a work in progress, building new programs to improve member heath, looking for opportunities to reduce waste in the system, and building a culture of continuous process improvement.

How are you bringing your experience with nursing home alternatives for seniors to your new role?

NaviCare was a good training ground for learning about taking care of seniors with multiple chronic diseases. Since about 10,000 baby boomers are turning 65 every day, and a large number of them have more than one chronic disease, we spend a lot of time working on ways to give this population the best care, in the right place, at the right time. A lot of my work in NaviCare involved transition of care models to keep the patients independent at home, and out of the hospitals and nursing homes. We are now using some of these successful care management best practices with our other populations.

What’s your favorite success story during your time at Fallon?

In 2013 we started a pilot with a government provider-payer program. This program involves helping the providers with care coordination for the members we share together, efficient sharing of data and successful embedding of case managers and navigators in the provider sites. We have grown membership in this program, and our care team now participates in the provider team office meetings. We have had a lot of member success stories in this program, which shows what collaboration between the different healthcare entities can achieve.

We’re very excited to be partnering with you and bringing PatientsLikeMe to Fallon members as a free online resource. How do you think your members will benefit from an online community and health-tracking site like PatientsLikeMe?

I think when patients are diagnosed with a new medical condition, whether it is rare or common, they need more than clinical care from their provider. In this complex medical environment, they need support and knowledge from a reliable source. PatientsLikeMe is a great tool that can provide a family of support beyond your own family – a family of support that “gets it.”

Even as a provider, it is hard for me to completely understand all the ramifications of an illness in a patient’s life, since I myself do not live with this illness. PatientsLikeMe is a group of people, a forum where you can meet people to talk to, who understand you and who are just like you. In addition, you can track your progress and learn more about your condition from a reliable source, all in partnership with your providers. It is a win-win situation for all in the healthcare system.


“In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer

Posted November 20th, 2014 by

Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below.

The journey
Occasionally I received cards in the mail offering discount lung or heart screenings. I think most people do now and then. I always throw them in the trash. In May 2012, I received one. For some reason I didn’t throw that one away. I called and scheduled an appointment for the heart and lung scan. Was told I’d get a letter in two weeks letting me know the results.

Imagine my surprise when 4 days later I received a voice mail asking me to call the hospital back as soon as possible. With feelings of dread and fear, I returned the call. Was told they were concerned about 2 places in my left lung. Was cautioned to not jump to any conclusions. They could be any number of things. I needed to have testing done. Was scheduled for MRI and PET Scan. Those results were enough to call for a biopsy.

Had the needle biopsy. My lung collapsed immediately. Very scary. Spent 1 night in the hospital. Sent home with instructions. Two days later began having problems breathing. Drove myself back to hospital and found out lung had collapsed again. This time was hospitalized 4 days.

While I was on a gurney in the ER, a pulmonologist from the hospital cancer center (didn’t know he came from cancer center at the time) came to see me. He asked me if I had been told the results of the biopsy. I told him no. He told me it was positive for cancer. Told me not to worry about it, they were going to take care of me. I remember lying there and I just nodded my head. I thought about it for about a minute then blocked it out.

The hope was to do surgery while I was in the hospital for the second lung collapse. The surgery, a lobectomy and wedge resection, would remove my upper left lobe and a portion of my lower lobe. Unfortunately the original scans showed calcium build up in an area of my heart. It was decided I needed to have the heart issue taken care of before the cancer surgery.

Had a heart stent put in. Had to be on a blood thinner for at least two months to make sure blood clots didn’t form on the stent. I then had to be off the blood thinner for a period of time. I have been seeing my oncologist every three months. Get CT scans every six months. Also see pulmonologist every three months.

The surgery
It was three months between time of diagnosis and my surgery. Seemed much longer. I was very worried the cancer would spread. When the time came for me to stop the blood thinner and no call came from doctor I was on edge. I felt they were forgetting about me. I made a call now and then to the lung cancer nurse navigator to remind them about me. I wasn’t that way all the time but I did have extreme anxiety at times. Earlier my family doctor had offered me something to help with my anxiety. I turned it down. Eventually my anxiety did reach a point where I did tell my PCP I needed some help.

Finally, the day of my surgery arrived. September 24, 2012. My parents had driven in from Colorado. Took me to the hospital. Other family would be joining them. At about 0730, the preparation began. I had no idea what kind of a journey was coming my way. I woke up October 8, 2012.

Nothing had gone as planned. What I know of that time is what I have been told by family and what I have read from my medical records. I was on a vent. I was combative and had to be restrained. I tried to pull vent out several times. I had lost enough blood I became anemic. Three days after the surgery I suffered respiratory failure. I developed an infection.

After waking up, I was very confused. I had and still have memory problems. I had to work on my penmanship. Didn’t have enough hand control to write. That has since returned. Couldn’t speak above a whisper due to a paralyzed right vocal cord from the vent. ENT told me there was a good possibility it would never come back. Ended up spending 6 months in a nursing home undergoing speech, physical and respiratory therapy.

Surviving and sharing
I find PatientsLikeMe to be a source of comfort. It is nice to know I can share my feelings and thoughts with those who have been or are going through similar experiences. It makes me stop and think about how I am doing. It is helpful to look at where I have been and see where I am and think about where I am headed.

Diagnosed June 2012 with lung cancer. Diagnosed April 2013 with uterine cancer. At last week’s checkup with pulmonologist, was shown something on my most recent scan. November 19, 2014 will be having bronchoscopy.

It has not been an easy journey. But when all is said and done, I am still alive.

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“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

Posted November 19th, 2014 by

We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about his experiences in a recent interview, everything from his handicap-accessible house to how physical therapy helps him stay mobile. Read his story below.

What went through your mind when you were diagnosed with RRMS back in 1994?

I didn’t really know too much about MS at the time. I’m not sure if I had even heard of it, so didn’t know what to think. The diagnosing neurologist said, “you have a mild case of MS.” I was young and carefree at the time and didn’t really worry about it too much. I kind of just went on with life.

It looks like you’ve done a lot of work on your house to make it handicap accessible. What are some tips and tricks you can share with the community?

I would say that everyone’s needs are different. It’s a good idea to have an occupational therapist that is experienced in doing home safety and accessibility evaluations come work with you in your home to see what your abilities and limitations are so he or she can make proper recommendations. I advise that people not wait until modifications are absolutely necessary before making them. I’ve been guilty of that in many regards, including waiting too long to get a power wheelchair. I should have gotten one sooner. It would have expanded my ability to go places and do things.

We saw some pictures on your photoblog of you in physical therapy – is that a daily routine? How does it help you manage your symptoms?

I was getting in home PT 3 days a week for a few months after suffering a seizure that prevented me from driving for several months. The PT is of course not a cure for MS, but it does provide exercises and strength training options that can help you maintain some abilities. When you’re sitting in a wheelchair all day, I think you can lose some function not just from the MS, but also from being sedentary, so it’s important to exercise.

Can you tell us about your daily meal set-up? 

I have a pretty simple daily meal routine. I often eat the same things day after day. For breakfast I eat some yogurt, a multigrain type bar and a banana. That rarely changes. Lunch is almost always a sandwich (some kind of meat and cheese along with some mayo) and a piece of fruit, maybe an apple, pear or peach. Dinner varies a little. A friend who lives here with me often makes a pretty bountiful garden salad that includes lettuce, spinach, beets, carrots, broccoli, cauliflower and more. Sounds good huh! In addition I’ll eat something else like canned soup, a bowl of cereal, maybe a pre-made Indian dinner that I like. Almost all meals are eaten on my wheelchair tray.

Your photoblog takes viewers through a day in your life – what inspired you to give back to others and raise awareness for MS?

I’ve been a long time volunteer with both the National MS Society and the Myelin Repair Foundation. I had never really done much volunteer work prior to my MS diagnosis. After I stopped working full time I didn’t really do much of anything productive with my time. It was actually a girlfriend who suggested contacting the MS Society to see if they had volunteer work I could do. They did, and I caught the volunteerism bug. I would recommend it to anyone. I often say that doing volunteer work is as beneficial and rewarding to the volunteer as it hopefully is to the people you’re volunteering to help.

Not everyone is as open about their personal experiences living with MS as you. What was it like working with the photographer and putting yourself out there?

I guess I’m kind of an open guy. After meeting Ted (the photographer) I felt comfortable with him and trusted him. I decided pretty much right away that I was going to be all in on this project. I figured if you’re going to do something, do it right. We hoped to have an impact with the photo essay, and only being half in so to speak wouldn’t do the job. I didn’t really do anything other than let someone take pictures of me doing things I normally do. I know Ted was amazed at how open I was. I didn’t really feel like I was doing anything all that amazing.

Photos courtesy of TGoldmanPhotography.com

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