Wednesday, December 4, 2013

Brad Rinehart on the Rock 'N' Roll Marathon


OM partner, Seize The World submitted this story for the OM Blog. Thank you, Seize the World for sharing and building awareness.
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.

This interview is from a phone conversation with Brad last week about his recent adventures and accomplishments.

Brad Rinehart crossing the finish line of the Denver Rock 'n' Roll Marathon.  Completing a marathon had been a long-term goal for Brad.  He experienced three seizures on the morning of the race.
Brad Rinehart crossing the finish line of the Denver Rock ‘n’ Roll Marathon. Completing a marathon had been a long-term goal for Brad. He experienced three seizures on the morning of the race.  (Photo by Ian McKittrick)
Why did you decide to run the Rock ‘n’ Roll Marathon? 
It’s really easy, you do everything: you do a 5k, you a 10k, you kinda do them all, right?  I guess as a runner you want to finish off your big long run eventually, you want to complete the cycle.  I always said, eventually I want to do a full marathon.  And I said ‘this is the perfect opportunity.”
With the Rock ‘n’ Roll Marathon in Denver you mean? 
Yes, and I had so much support—I could not have made it through the whole marathon without my coach, Charles, I could not have made it through without his help.  And doing it with Seize The World, they really helped me out.  This was just the perfect opportunity to do the full marathon.  I would never have done the full marathon by myself, you know what I mean? It was basically right in the back yard too.
What were some of the challenges you faced in preparing? 
Well, I said to Charles, “Ok, I guess I am going to run the full marathon.”  And that (26.1 miles) was just a big number.  It was a big number in itself.  And I just kept telling myself, “I’m going to do this.”
Brad Rinehart running with Charles Koller on 17th st. in the Rock 'n' Roll Marathon.  Charles helped Brad with training and preparation for the marathon.
Brad Rinehart running with Charles Koller on 17th st. in the Rock ‘n’ Roll Marathon. Charles helped Brad with training and preparation for the marathon.
What was your training plan?  
Just about every other day I would take my dog and then run a little bit and then walk a little bit.  Each day I would try to build up my mileage.  You know what it’s like: You have your bad days, you have to push up your mileage.  I still kept thinking: “Am I going to make this thing?”  There was always that.
Were there any moments when you thought to yourself, “what am I doing here?”
On race day, I had three seizures. (Brad had two seizures between 2a.m. and 5a.m. on race day, and a third at 6:00a.m. after meeting up with the team. The marathon began at 7:30 or so.) Then I just said, “Ok it’s just like a normal day.”  I just knew that I wanted to finish, it was just kind of the “game on” kind of attitude though. And I wanted to finish.  The other thing with the marathon was doing the hike up Mt. Sherman with John Olson and Colorado Climbers for Epilepsy and also the support of Outdoor Mindset. I don’t think I would have ever done that without them.
What was that climb like?
If you could imagine just about a trillion ball bearings or marbles, and if you tried to walk up. No matter where you walked, there is no way you could try to keep your balance.  And here are these rocks that have been here for like trillions of years.  (Brad is describing the infamous scree fields on Mt. Sherman’s West Slopes and SW Ridge.  At one point, he scraped his knees during the hike before borrowing a set of trekking poles to help with balance on the descent).
I think I left a nice trail of blood on the side of the rock…you know, basically, I can laugh at it now, but you know by the time I came all the way down, you could see the parking lot, there was all these rocks you had to go across, but let me tell you, trying to walk across all these boulders, trying to go from one rock to the other, it’s not easy.  It was an epic adventure.
Brad Rinehart and Charles Koller atop Mt. Sherman.  The annual climb was organized by John Olson and Colorado Climbers for Epilepsy Awareness.
Brad Rinehart and Charles Koller atop 14,036ft. Mt. Sherman. The annual climb is organized by John Olson and Colorado Climbers for Epilepsy Awareness.
Did you think about the Mt. Sherman climb while you were running the marathon?
Climbing that, and knowing that I could do that, absolutely pushed me forward for the marathon. I was telling Charles, I was only hoping to make it in 6 hours, but Charles told me I finished in 5 hours and 56 minutes, I still just couldn’t believe I actually finished the thing in that amount of time.
How did your neurologist react to news of the marathon?
I took my medal to show my neurologist and she was really impressed by that.
What do you think about the recent news with Neuropace and the FDA? 
I was really excited to see that thing getting approved, that is really a big deal, I think it is a really big notch. I was one of the first to start off with this [treatment].
Do you have any advice for people trying to find a safer or easier way through life with epilepsy?
No, but I guess you could say it this way: everybody has their bad days  and everybody has their good days.  One week I could have a perfect week, and the next day I could have a horrible seizure.  You just don’t know.  You just don’t know.  I don’t think there is an answer.
Right now there is no cure for epilepsy.  There isn’t.  As much as I would like for there to be…if we did, you and I would both be billionaires, wouldn’t we?  That’s just…I don’t…we don’t have the answer. Your friends are your safety valves, I guess.
And I know Tracy says a lot of the time when I have a breakthrough [seizure], I have to sleep. Sometimes my seizures just last about 30 seconds and that’s it.  Sometimes I’ll just have confusion, and I’ll sit down and that’s the end of it. Everybody has a different trigger and a different cure for their stress. I run, because that’s what cures my stress.

Tuesday, December 3, 2013

Susan Mollohan isn’t Taking Parkinson’s Lying Down


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.'"



You can be part of the answer to Parkinson's disease. Sign up today for Fox Trial Finder to learn about ongoing clinical trials in your area and get involved in the pursuit of a cure.

Introducing...Your new Boulder OMbassador, Kat Drake


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