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Leaning on loved ones—An interview with lung cancer member Clare

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When Clare (Riverdale) was diagnosed with non small-cell lung cancer, her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before. We recently connected with Clare, who emphasized “the value of a loving mate” in her experience with lung cancer. Tell us a little bit about yourself. I am 73 years old, grew up on a farm in Alberta. My father smoked a pipe and used to joke about turning the air blue. No one else in the family got cancer. I smoked starting at age 20 while studying for exams, trying to stay awake, then continued as people who smoked got a coffee break and those who didn’t smoke really didn’t get a break. I continued to smoke less than a half a pack a day till age 28, then thanks to Nicorette gum stopped easily, as did my husband. We are very physically active. I rode my bike several miles to my job — weather- permitting — as we have great bike lanes and didn’t live too far from the center of the city. We …

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“I had no idea that my thyroid controls so much” — PatientsLikeMe member Barbara shares her experience for Thyroid Awareness Month

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January is Thyroid Awareness Month. So, how much do you know about the small, butterfly-shaped gland that influences the way your heart, brain, liver, kidneys and skin function? To help spread #thyroidawareness, we asked member Barbara to tell us about living with thyroid cancer and hypothyroidism, a condition that affects over 6,000 PatientsLikeMe members. Barbara shares how her thyroid issues have taken an emotional toll on her, as well as some advice on being your own advocate: “Fight for your right to feel normal again.” Tell us a little about yourself. What are your hobbies and passions? I really love photography and a new passion is gemstones. I have been taking photos since I was a kid.  I love landscapes and different and interesting people. I still have several film cameras but I love the freedom of digital. I enjoy video and web design as well. I have gotten the opportunity to study gemstones and it has opened up a big new world. I am currently studying how to identify gemstones. It is like being a detective.  There are so many different types. Learning their origins has been fascinating. I also love watching Kung Fu movies with my husband. When you were diagnosed, what went through your mind? My diagnosis was a little odd. …

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“I try my best to make the most of each new day”– An interview with ALS member Brian

ALS, Conditions / By

Brian (Dunric) is a former game developer and has been living with ALS since 1998. Unable to find a local ALS support group where he lives in Lodi, CA, he discovered PatientsLikeMe in 2012. In a recent interview, Brian opened up about dealing with the uncertainty of his condition the best way he knows how — with a sense of humor. Here’s what he had to say … 1. Tell us a little about yourself. I’m your average nerd who refuses to grow old, despite being 41 years old now. Diagnosed so many years ago and not having close family ties was rather trying on me. I’ve had my share of nursing home nightmares and some caregivers that made me feel like family. Some of kids I’ve known and helped raise over the years now have children of their own. It seems like the world changes but I do not. I try my best to make the most of each new day, and it feels the proper way to accept life with ALS. 2. In your profile you write, “Many trials and tribulations of ALS have pushed me to limits that I have never thought of before.” Can you describe …

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Meet Craig from the PatientsLikeMe Team of Advisors

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We recently sat down with Craig, one of your 2015-2016 PatientsLikeMe Team of Advisors. Craig is living with fibromyalgia and severe degenerative disc disease, the result of a serious car accident in 1978. Craig is active on PatientsLikeMe and other online communities, where he adds his voice to discussions about chronic pain, healthy living and LGBTQ issues. He’s also written essays to raise awareness about life with fibromyalgia, a “hidden disability” he feels is commonly misunderstood. In this interview, Craig shares how important it is to have a community he can turn to for support and to remind him he’s not alone. What gives you the greatest joy and puts a smile on your face? It’s a mixture of both smiles and sadness when I think of my greatest joys. I tragically lost my mother in a traffic accident when I was 19 years old. We had started a conversation the week before where I was trying to “come out” to her (that I was gay). I procrastinated and when she asked if I was, I said I wasn’t sure, that I was working on that answer, and that I’d tell her more next week. Well that conversation never happened, …

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“It is definitely a daily challenge” – An interview with PTS member Holden

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Holden Montgomery (holdenmonty), an administration support technician for the Air Force Space Command, was deployed to Afghanistan in 2010 and later diagnosed with PTS, depression, and anxiety. He joined PatientslikeMe in March 2015, where he’s been connecting with other vets and sharing how he copes with his conditions. We recently caught up with Holden, and here’s what he had to say… Tell us a little about yourself. What are your hobbies and passions?  So I must admit that when I started with this journey after my deployment and home break-in/vandalism I didn’t really have any hobbies or passions. Since my only focus while I was deployed was to live until the next day, that is the mindset that I came back with and still struggle with, but I will touch on that later. So the biggest thing that saved me when I was struggling the first several months before my first son was born was photography. I have a Nikon D5100 DSLR and I would go exploring in nature and take photos of whatever I thought looked awesome or beautiful. I have thought about doing that again here in Colorado Springs but when you wake up to Pikes Peak every …

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#CervicalHealthMonth: Member Laurie opens up about living with cervical cancer

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Every year, more than 12,000 women in the U.S. are diagnosed with cervical cancer. And every January, the National Cervical Cancer Coalition (NCCC) kicks off Cervical Health Awareness Month. In honor of #CervicalHealthMonth, we asked Laurie (lroz57), who joined PatientsLikeMe in 2012, to tell her story. Laurie was given a 50/50 chance of survival when she was diagnosed back in 2003, and endured a difficult treatment experience. Here’s how she describes it: “I was diagnosed on 12/18/2003 with Stage 3B cervical cancer. The tumor was as big as a tennis ball, and in the vaginal wall. I had 28 ext. radiations, 2 int. radiations and 3 low-dose chemo treatments. Talk about burns! Now I have more radiation damage than I thought possible. But as I tell people, ‘I’m alive!’” Throughout it all, Laurie has committed to staying positive and active — bicycling, exercising at the YMCA and volunteering for the National Patient Advocate Foundation. As for her experience on PatientsLikeMe, she shares, “I love connecting with others in my position. You never know what you might learn.” If you’re living with cervical cancer, the NCCC has lots of ways to get involved, including a #CervicalHealthMonth twitter chat on January 12. …

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Meet John from the PatientsLikeMe Team of Advisors

ALS, Conditions / By

We’d like to introduce you to John, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Shortly after being diagnosed with ALS in January 2014, John decided to retire from his 37-year career in IT. His new focus? Learning everything he possibly can about his condition — and plenty of fishing. Fueled by what he calls his “zeal for knowledge” about ALS, John has been proactive in researching programs and clinical trials that might benefit him. He’s already participated in studies at Massachusetts General Hospital, the ALS Therapy Development Institute, and Bronx VA Medical Center. Here, John talks about the importance of being his own advocate and shares some advice for newly diagnosed patients: Keep asking questions! What gives you the greatest joy and puts a smile on your face? I have a passion for fishing and then cooking dinner for my family and friends who like seafood. 2 hours from catching to dinner table is what I call fresh fish. Dinner usually starts with a glass of wine and fishing tales of the whopper that got away. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that …

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“Do not give up, find a reason to keep going.” – An interview with ALS member Lee

ALS, Conditions, Patient Experiences / By

Humor and a passel of grandchildren keep Lee (slicky) going. He’s been living with ALS for nearly three decades and refuses to let his condition get the best of him. Now retired, he delights in his family and is very active in our forums – welcoming new members, doling out information and sharing his positive attitude with others. We recently had the chance to catch up with him. Here’s what we learned… 1. Tell us a little about your life. You’re retired – what are you most passionate and interested about right now? I have been fighting this disease for 27 years, it has been a rough road, but I am so grateful for the time I have been given. I worked up till 10 years ago, then I retired because I could not do my job anymore. My passion in life right now is to enjoy my family, and to live long enough to see a cure. I like watching TV, playing video games, do as much Tai Chi as I can. 2. You say in your profile, “If you think you’re going to die, you will so I keep going.” You’ve maintained a very positive attitude. What helps …

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“You may not like it, but make the MOST of it.” – An interview with IPF member Nikki

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When Nikki (Nimiha) was diagnosed with IPF in 2010, she was already a survivor of both ovarian cancer and a heart attack. Staying positive and up-to-date on new information is now this retired RN’s best defense – and she’s been sharing it with her IPF family on PatientsLikeMe since March. We had the chance to connect with her recently, and here’s what we learned … 1. Tell us about your life. What are your hobbies and interests? How do you most enjoy spending your time? I was born 71 years ago in a town named Escondido, in Ca. My mother had been a Wave in the Navy in Washington, D.C. where she met my father, a career Marine. It was war time and he was transferred to Camp Pendleton Marine base in Oceanside, where he was immediately sent overseas to fight. I was an only child with no family living close by so my Mother and I were very close. My father went up through the ranks and was up for Brigadier General, and was honored to take over training the 7th Marines at Camp Pendleton in 1962. Two weeks later he died of a heart attack and my mother …

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“I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa

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Lisa (Ltbeauti) was studying to become a teacher in Richmond, VA, when she was diagnosed with ALS—the same type that affected both her sister and father. After joining PatientslikeMe in 2008, Lisa has made it her mission to stay proactive about her health and, like any good teacher, offer support and share her experience with new members in the community. We caught up with her recently to learn more about how she copes with ALS, and here’s what we learned … 1.  Give us a glimpse of a regular day in your life. What are some challenges you face? What do you most enjoy? I need assistance with most things now. I am in a power wheelchair 95% of the day. I will occasionally transfer to a recliner with a lift seat on top the cushion. The biggest challenge I face is constantly changing strategies to remain as independent as possible as the progressing nature of this disease takes away my ability to do even simple tasks. I can no longer speak and I use an iPad with speech software to communicate. I really enjoy getting outside to be around some plants or flowers. I was an avid gardener before ALS, …

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