Charles Wienbar is Getting Back to the Top of the Mountain.

When Charles Wienbar was diagnosed with MS in 1994, the scariest thought for him was the possibility that he might end up in a wheelchair. For Charles, that possibility could mean a drastic change in lifestyle; it could mean the end of skiing, mountain biking, running on the beach and hikes in the woods with his family. He thought, “That’s a very scary life I could be living. I don’t know if I can do this.”

For the first three years after his diagnosis Charles was symptom-free. Eventually he began to use a cane and for the last eight or nine years he has been in a wheelchair.

Prior to his diagnosis Charles was an avid skier. He was always the first one on the slopes in the morning, eating his lunch on the chairlift to squeeze in extra runs, and timing himself perfectly so if he was at the bottom of the hill at 3:59 PM he could get one more chairlift ride and be the last person off the slopes at the end of the day. His love of fresh powder wasn’t going to stop just because he could no longer ski the “conventional” way.

On a sabbatical from work Charles went to the National Ability Center in Park City, Utah to take courses in adaptive skiing. He told himself, “Okay, I am going to go for six days and I will either learn how to ski or I will put this away and find another sport.” The first day Charles was out on the slopes he fell a number of times just getting to the chairlift. “I was freaking out – you have all of this equipment on, you’re in this uncomfortable monoski (which is essentially just a bucket seat on a ski), your balance is off, you have outrigger poles, and a helmet and goggles!” Despite the adjustment, by the third day Charles was able to get on and off the chairlift without difficulty, he started to excel at linking together turns, and he really felt like he was skiing once again. “It was so great because that was such a huge part of my life before MS hit and I thought it was gone, and then all of a sudden it was back. It was like seeing an old friend.”

Despite its present challenges, it is incredible how many positive things have emerged from Charles’ diagnosis. Through No Barriers, an organization whose mission is help individuals with disabilities live full and active lives, Charles has had the opportunity to meet some incredible people – including olympic athletes, Mark Wellman, the parapalegic who successfully climbed El Capitan and Half Dome in Yosemite National Park, as well as Erik Weihenmayer, the blind individual who climbed Mt. Everest. As Charles explains, “You are able to put yourself in venues where you run into other people who are like minded. Just because you can’t do it the usual way doesn’t mean you can’t do it.”

For Charles, the importance of staying active isn’t purely recreational. “I stay active because of the work that MRF is doing in terms of repairing damaged myelin. If it works, if one day you flip the switch, I want to be able to get out of my wheelchair and walk. You’re doing your part so I am doing mine.” His part consists of swimming four or five days a week, hand cycling a couple times a week, using an off-road wheelchair, taking horseback riding lessons, scuba diving, and of course skiing whenever possible. With his wide array of activities Charles is able to keep his body in peak condition, while maintaining the active lifestyle he had before MS. It’s his hope for the future, the research of the MRF and his ability to stay “an active member of life” that gives him the greatest support. “I have MS and I am in a wheelchair, but that doesn’t mean I am not part of the world.”

It seems like Charles’ positive outlook is rubbing off on those around him as well. Outside of his athletic endeavors Charles has a rich family life, including his supportive wife Sharon and two wonderful daughters. Even his family has been changed for the better due to his diagnosis. His eldest daughter volunteers in the community and is committed to understanding and working with kids with developmental disabilities. When his youngest daughter was in preschool, there was a girl in her class with Rett syndrome. Charles says that even her teacher noticed that his daughter specifically went out of her way to keep her classmate included and taken care of. “The positive was that they understand that there are people out there with disabilities and they shouldn’t just be dismissed. That you shouldn’t be afraid if you see someone in a wheelchair, or if you see someone that needs a little bit of help you should go over and help them. That’s been a good lesson for the kids.”

Now that it is well into fall and ski season is just around the corner, Charles is ramping up his exercise regime and getting ready to get back out on the slopes. He is looking forward to spending some long weekends in Park City in January and February, and feels he is well on his way to skiing some interesting new terrain. For Charles, getting back to the top of the mountain is the next challenge on his list.

How are you staying active so that you can also benefit from the work of the Myelin Repair Foundation in the future? Post your activities to the comment section below.

Tags: activities, charles wienbar, erik weihenmayer, mark wellman, monoski, national ability center, no barriers, positive outlook, rett syndrome, scuba diving, sharon wienbar, skiing, staying active, staying active with ms

This entry was posted on Monday, November 2nd, 2009 at 1:14 pm and is filed under Creative Expression, Interviews, Patient Resources, Stories. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.