feature interview

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

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 …

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

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 …

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

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 …

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

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 …

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

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 …

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

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 …

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

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 …

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“Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS

  There’s been a lot of awareness going on for ALS with the IceBucketChallenge, and to help keep the momentum going, PatientsLikeMe member Dee (redrockmama) shared her personal experiences with the neurological condition. She made the decision to install a feeding tube early in her journey, and now she is managing her weight through overnight supplements. Read on to learn more about her ALS story and why she thinks every person living with ALS should become their own best advocate.   Tell us a little about yourself and how you are doing, Dee. I am 62, married and a mother and grandmother. I have bulbar onset of ALS. I have always been very active and independent to a fault. I was raised horseback riding and still have a horse. I am told my disease is progressing slowly but of course to me it doesn’t feel that way. Many people in the community talk about how finding an official diagnosis isn’t easy – what was your experience like?  I actually found out fairly quickly. My symptoms started in April 2013. First doctor thought it was a stroke, second told me it was stress and of course they did MRI’s and blood …

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Diabetes, behavioral changes and a surprise donation: An interview with Melinda Maryniuk, MEd, RD, CDE, FADA

Diabetes Alert Day is just around the corner, and to get a jump start on raising awareness for this chronic condition, we recently caught up with Melinda Maryniuk. She’s the Director of Clinical Education Programs for the Joslin Health Solutions division within Joslin Diabetes Center. Her areas of special interest include nutrition, patient education, behavior change, and increasing access to quality diabetes education services. (Check out her full bio at the end of this post.) Melinda spoke with us about how she got her start in diabetes education, what she wished more patients knew and her philosophy behind behavioral changes. Can you tell us a little about how you became interested in dietetic education? Growing up, I had always seen myself as a schoolteacher. But when it came to choosing a major in college, my dad pushed me to be some kind of scientist (I don’t remember why) even though I was not particularly interested (or good at) the subject! After changing majors multiple times (medical technology…biology…) and feeling completely without direction – my mom asked me a really important question. What do you like to do most? When I answered “eat” – she suggested I consider being a dietitian. …

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