Wednesday, December 4, 2013
This month, Seize The World veteran and endurance athlete Brad Rinehart took some time to speak about a recent milestone: completing the Denver Rock ‘n’ Roll Marathon. In order to prepare, Brad worked closely with team coach (and STW Development Director) Charles Koller. Part of that training even involved an epic climb of the 14,036 foot Mt. Sherman in August, together with John Olson and Colorado Climbers for Epilepsy Awareness as well as Outdoor Mindset and Seize The World. Brad lives with his wife Tracy in Aurora, CO. Together, they are an amazing couple: outgoing and kind, but also undaunted by the challenges of epilepsy.
Posted by Unknown at 10:35 AM
Tuesday, December 3, 2013
Participating in clinical trials is one of many ways to stay active in the pursuit of a cure for neurological disorders, such as Parkinson’s disease. In this post, shared by The Michael J. Fox Foundation, Susan Mollohan shares how she combines her love for exercise and determination to participate in the pursuit of a cure for Parkinson’s disease by participating in clinical trials. For more information about participating in clinical trials, visit www.michaeljfox.org/clincialtrials.
Susan Mollohan first noticed a tremor in her hand while at work as the Dean of Students at a high school in New Hampshire. After about four to six months of living with the tremor, the high school nurse, a friend of Susan's, suggested she see a neurologist. Soon after her diagnosis with Parkinson's disease (PD) in March 2009, Susan soon began taking advantage of opportunities to learn more about her diagnosis, and ultimately, do something about it.
At an educational seminar at Boston University about Parkinson's disease, Susan learned about an observational clinical trial studying the impact of exercise on PD progression that needed volunteers. "I was motivated to participate so that researchers could publish information about the benefits of exercise for other people with PD," says Susan, an avid skier and yoga devotee.
The study at Boston University lasted two years and required participants to come in for two visits each year. Participants were asked about their exercise routine, including type and frequency, and then underwent general physical assessments of their pace, balance, etc. "Participating in this trial gave me an improved outlook and attitude about my diagnosis," says Susan. "People need to take control of their health questions and get out there to find answers. We have to advocate for ourselves and not give in to the diagnosis." You can learn more about participating in clinical trials by visiting www.michaeljfox.org/clinicaltrials.
Since the completion of the study, Susan says she's willing to participate in another trial has registered as a volunteer on Fox Trial Finder, The Michael J. Fox Foundation’s online clinical trials matching tool. Fox Trial Finder (www.foxtrialfinder.org) matches interested PD patients and control volunteers with the clinical trials that need them, and allows them to send direct anonymous messages to pursue enrollment. In doing so, Fox Trial Finder empowers the patient community to play an active a role in drug development. Since its launch in 2011, over 24,000 people both with (76%) and without (24%) Parkinson’s disease have signed up on Fox Trial Finder.
In addition to searching for new trials to participate in on Fox Trial Finder, Susan does yoga more now than before her diagnosis and has even written a book about the positive effects of yoga on her Parkinson's symptoms. Susan also fundraises for Team Fox and this year she and her husband Steven will participated for the fifth time in the annual New England Parkinson's Ride, a 50 mile bike ride through Maine benefitting The Michael J. Fox Foundation. Her team’s name is Suzy's Shakers.
And she's certainly shaking things up: Susan says her goal is to put a face to Parkinson's disease. Recalling an anatomy class she visited while working at the high school, she says, "Two girls happened to be giving a presentation about PD. They used a picture of a hunched over, elderly man. I told them, 'That's not the face of Parkinson's...this is.'"
Posted by Unknown at 2:48 PM
July 9th 2011 my world that I knew changed. I received a call from my Dr. saying that it’s confirmed. I had MS. I knew this was bad but didn’t really understand what it meant.
I lost my vision in my left eye 6 years prior but had a very physical life, full of hikes and doing what I loved, like hiking with dogs. Eventually my vision came back, and although it was scary, it was back. In May 2011, with various stresses in life, I lost my vision again. A couple weeks later, standing in wet grass and playing with dogs, I realized I had no feeling in my left foot and leg standing in the wet grass. I couldn’t feel it! I am a fighter and thought: odd…but nothing could be wrong. I was then convinced by my husband to see an eye Dr. who convinced me that I really needed to see a neurologist quickly.
In July, my life changed because I was dx with MS. How could this happen to me? I was healthy and had a great lifestyle. I hiked for a living. This could not be right!
On July 9th, I started a new journey, learning and living with MS. I didn’t want to give up the thought of hiking and doing what I loved. I searched for some support online and found Outdoor Mindset’s Meetup Group. I didn’t feel that sitting in a support group in a restaurant (eating food that I didn’t normally eat) was the way to go. I was so inspired talking to Kyle, the founder of Outdoor Mindset - a support group for people like me, who thrive on being outside. Outdoor Mindset gave me hope that I could continue to thrive and enjoy doing what I loved - being outside and pushing my limits.
Two years later, after not being able to walk more than a block, meeting and getting together with others who have neurological challenges, I am hiking and doing everything possible. My first Meetups with this group inspired me to continue to keep on trying to be outside. Nature is what gives me purpose. Outdoor Mindset is not only a support group of people who understand the challenges that I go through, but of others who have different challenges. I have laughed and cried over the challenges while we walk and MOVE, but Outdoor Mindset has given all of us hope.
I can’t say enough about Outdoor Mindset. Throughout my journey, it’s been so wonderful to meet others going through similar challenges but are fighting to be outside and enjoy what nature has to offer for healing! I am not a fan of support groups that are inside. I only have so much energy with my chronic illness, and I want to spend it where I love the most, OUTSIDE and continuing my dreams of what I always wanted to do! Now with Outdoor Mindset I feel like I get the motivation to set new goals and challenges, all with people going through challenges of their own. Somehow it makes it easier and more motivating! Thank you Outdoor Mindset!!!!!! Love you guys for what you have given to me!
Q: What are you most looking forward to as the Boulder OMbassador?
A: Meeting new people like myself. I am going through a lot of changes personally and miss hanging out with people who understand the challenges and motivations that I face. I feel as though I might not be able to do what I want to in the future so it important to me that I do “my bucket list” and continue to push myself.
Helping others. I feel like I am pretty positive in general. I would love to inspire others and help them on their journeys. I have been told I do this with my postings on Facebook and my journey of changing my diet to help my health and fight MS. I also believe in educating others about MS and the early possible signs. If I had caught it earlier I might have not lost so much from it, but on the positive note, MS has taught me a lot!
Submitted by Kat Drake
Posted by Unknown at 2:27 PM