ALS

Patients as Partners: John and David share their clinical trial experiences

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. Recently, we sat down with John (Dockstoy), living with ALS, and David (Davidgewirtz), who’s living with lung cancer. John and David are both interested in research and have been involved in a few clinical trials. Below, they share their firsthand trial experiences, offer up some advice for others, and talk about the importance of collaboration and mutual respect with their care teams along the way. Can you tell us a little about the clinical trials you’ve participated in? John: I took part in trials at: Massachusetts General Hospital (September 2014) – phase 2, randomized, double-blind placebo-controlled Multicenter Study of Autologous MSC-NTF Cells in Patients With ALS Bronx VA – Brain and nerve stimulation for hand muscles in spinal cord injury and ALS Weill Medical College of Cornell University – Safety of Capryclic Triglycerides in ALS: A Pilot Study David: I was diagnosed with stage four metastatic lung cancer just about five years ago. June 2011. Since that time my only form of treatment has been targeted therapies which were available to me through clinical trials. The first clinical trial I received …

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“I learned that life is precious.”

Meet Jenna. She’s been part of the PatientsLikeMe Team since back in 2012 when she first started as an intern. And for Jenna, working at PatientsLikeMe is personal. Her father was diagnosed with ALS when she was just eight years old, and so, being part of PatientsLikeMe is especially meaningful for her. For ALS Awareness Month this year, Jenna volunteered to talk on camera about how the condition impacted her childhood; sharing how a family banded together to care for a father, husband and friend. “I learned that life is precious,” she says. “And I learned at an early age that it’s important to do what you love and do something that makes a difference.” Hear her story! Share this post on Twitter and help spread the word.

“TransFatty Lives”: An interview with ALS filmmaker Patrick O’Brien

Meet Patrick O’Brien, a.k.a. “TransFatty,” whom we met through our friend and longtime PatientsLikeMe ALS member Steve Saling (Smooth S) after catching up with him earlier this year. Patrick is one of Steve’s housemates at the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living and he’s also an award-winning filmmaker. Back in 2005 when he was diagnosed with ALS, Patrick was making his mark on New York City as a rising filmmaker, DJ, infamous prankster and internet sensation. He called himself “TransFatty,” as a nod to his love of junk food. After his diagnosis, he decided to keep the cameras rolling – on himself. “TransFatty Lives” is the result of a decade of footage that shows his progression with the disease and it’s gone on to win the Audience Choice Awards at both the 2015 Tribeca and Milan Film Festivals. We visited Patrick last month to chat with him about the film and life in general. Here’s what he had to say. “TransFatty Lives” is available on iTunes, Amazon, Google Play, and Xbox.     Share this post on Twitter and help spread the word.

“Technology is the cure”: An update with member Steve Saling (SmoothS)

Recently, we paid a follow-up visit to ALS member Steve Saling (Smooth S) to see what he’s been up to and talk about future plans. When we last spoke with him in 2012, Steve was using his expertise as an architect and his interest in technology to spearhead the ALS Residence Initiative (ALSRI), starting with the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living in Chelsea, Mass. The ALSRI has grown into a series of fully automated residences – now in multiple cities nationwide – that allow pALS the freedom of independent living alongside 24-hour care. And just this past Sunday, the Dapper McDonald ALS Residence officially opened as the second residence at the Leonard Florence Center for Living. “Until medicine proves otherwise, technology is the cure,” Steve says. Watch what else he has to say in this interview. For more on Steve and footage of the ALS Residence, here’s the rest of his story!   Share this post on Twitter and help spread the word.

A year of milestones for Team Gleason – and they’re not slowing down.

Three years ago, we posted a piece on Steve Gleason, former NFL player for the New Orleans Saints. Diagnosed with ALS in 2011, Steve has made it his mission to spread awareness and advocacy. Since then, Team Gleason has been hard at work to improve the lives of those living with ALS and 2015 proved a year of milestones. Check out their year in review: January: While attending the State of the Union Address, Steve had a meeting with Secretary Burwell, the Heads of Medicare and Medicare Advocacy, and leaders in the House and Senate. April: In Los Angeles, the “Gleason” Project Red Carpet Premier took place and IMG Films announced their full support and partnership on the documentary film. May: Microsoft released eye drive technology research as a viable solution for mobilizing power chairs. Through their alliance, Team Gleason is working with Microsoft to make this technology more widely available while Steve continues to test it. Later in May, Steve addressed the Louisiana Legislature and leaders at the Department of Health and Human Services to advocate for benefits for those most vulnerable. June: Team Gleason participated in the #SmackdownALS campaign with Microsoft in the Cannes Lions International Festival of Creativity. …

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ALS Blog: “Hope makes us strong.” – An interview with ALS caregiver Cathy

Meet Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope. We took time to connect with her recently and this is what we learned…  Tell us a bit about your life. How has it changed in the year since your husband’s diagnosis of ALS? Living in suburban Nashville, my husband and I were enjoying his retirement. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family. One son living in our area, one son finishing college in Michigan and a daughter in Chicago. Before the diagnosis, we loved to take road trips. Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk. His stories were endless. Being married to him for many years, I would, at times, roll my eyes. I had heard those stories many times before. But I loved them, nonetheless. Now, in the year since the diagnosis, we have all the kids back …

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

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 John from the PatientsLikeMe Team of Advisors

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

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

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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