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She was young, had a great job, and was living an active, spontaneous and happy life.
Meet Nikki Aragon, a Colorado native and self-described, normal 27-year-old woman whose life took an unexpected turn when she was diagnosed with multiple sclerosis (MS) in April 2010.
“I just cried,” said Nikki of her diagnosis. “It was a relief to have an answer for my symptoms, but at the same time, it was very scary, because of what MS is.”
The disease began to make its mark on Nikki’s life. She had to leave her job, she no longer had the energy to hang out with her friends, and her favorite mountain activity, hiking, seemed out of reach.
“I felt horrible all the time and thought it was never going to get any better. Some days I didn’t even get out of my pajamas.”
Even if there are things you think you can’t do, Can Do MS teaches you that you CAN.
In 2014, her primary care physician, who had been working closely with Nikki on holistic solutions for her symptoms, recommended the CAN DO® Program. Nikki quickly applied and was accepted.
“It felt like a really big gift,” said Nikki of her acceptance. “I was so excited at the prospect of getting the support and instruction I needed to start the journey to a more positive and healthy life--this is how medicine should be, I thought.”
But at the same time, there was trepidation. “It was really overwhelming to think about facing my MS head on for four days, but once there, I realized I wasn’t alone. You’re with a group of amazing people who, for once, truly understand what you’re talking about. For someone to be like, ‘Oh, I experience that,’ was so relieving.”
The extensive and personal attention Nikki received at the program was an unexpected surprise. “I had no idea that there would be an entire team there, dedicated to supporting me and my unique symptoms for four days. I typically get 15 minutes with a neurologist every six months, so having all that support there was mind blowing.”
“It was very humbling to know that I matter,” Nikki added.
I am blessed to have the life that I do.
The CAN DO Program gave Nikki confidence and brought a sense of normalcy back into her life.
Using individualized techniques and strategies that she learned, Nikki has less pain, more energy, and her depression is improving day by day. “I focus on the parts of my health that I can actually control and don’t dwell on the parts that I can’t. I’m working again, and I actually feel like going out and doing things with my friends and family!”
Nikki was able to attend the CAN DO Program, along with 42 other people, thanks to the generosity of sponsors and individual donations—it costs $6,000 per each participant to attend the program.
“I want to let you know that your donation matters, and it has affected my life forever,” said Nikki. “It was amazing and life changing, and I can’t thank those that supported this program enough.”
Help more people like Nikki attend our comprehensive programs–all offered free of charge to participants and their support partners. You CAN make a lasting impact on the health and well-being of many more people living with MS, so that they can continue to live a full life. Donate today.
The CAN DO Program is made possible thanks to the generous support of the following sponsors: Biogen; Genentech, Inc.; Genzyme, a Sanofi company; Brotherton Foundation; Reeve Foundation Quality of Life Grant; Teva Neuroscience; and Acorda Therapeutics, Inc.
“Is mom going to die?” eleven-year-old Patrick asked his father.
“No, but she may fall down more,” answered Dick. “And we’ll just pick her up and keep going.”
It was earlier that night in 2006 that the Kelly family gathered around the dinner table, talking about their day when the phone rang. Patrick’s mom received a call that would change their dinner talks forever. Robin Kelly’s doctor told her she had primary progressive multiple sclerosis (MS).
“I was surprised and unsure,” said Robin of the news. “What did MS mean for my future? Would I be in a wheelchair? Would this be my death sentence?”
MS turned out to be Robin’s driving force for paying it forward. She wasn’t going to give up; she was going to give back.
It started when Robin saw a small advertisement for Can Do MS in a magazine. It had been six months since Robin’s diagnosis; she felt that she had a basic understanding of MS and a good treatment plan, but she wanted more. “I wanted to talk about healthy living and things we could do to have MS be less impactful on our lives than it might otherwise be. That’s when I discovered the CAN DO® Program.”
”It talked about how to live your best life now. And I thought, THIS is what I need.”
The four-day CAN DO program teaches people with MS and their support partners how to take control of their lives within the context of their MS. Participants receive an unsurpassed level of personal attention and are able to speak with health care professionals in an intimate, unhurried environment that is rare today. “During the program, we didn’t just talk about different treatments. We talked about here is what you can do to feel better and to live your best life now.”
“It has a very personal and soulful impact that goes to the core of you.”
Participants faced their fears of the unknown. “Everyone we met had unique symptoms. Some people had to use a cane. Some people had to use a wheelchair. But they could do it. We looked at each other and said, ‘We can do this MS thing. It’s not going to break us.’ ”
The program also provided a unique opportunity for Dick to expand his understanding of MS, connect with other support partners, and learn strategies to live fully with MS together.
“It was significant for Dick to be there with me. To hear the same information, to feel the same support--you wouldn’t get that anywhere else. He came away from the program feeling as strongly about its benefits as I did.”
It was also one of the last programs that founder Jimmie Heuga was able to attend. “Jimmie sat right next to me at dinner, and at that time, his MS symptoms were debilitating, but he was so positive and so satisfied with his life. He told me ‘I have a lot of living left to do,’ and I thought, ‘Alright, I can do this, too. I can enjoy life.’ ”
After experiencing the positive impact of Jimmie and the CAN DO Program, Robin realized that MS was just a bump in the road. “It sucks, but it’s not a show stopper. You just get up and go, and keep moving. I’m able to do things with my husband that I thought we had lost. I can be a part of my grandchildren’s lives. I can dance. I can travel. I feel like there is some really great life in me to give to others.”
That’s exactly what Robin did. “It was an incredible blessing to be able to attend the CAN DO Program—no other organization provides the same sort of value. I began to give back because I wanted the next person to go, and the next person, and the next person after that.”
It started with a donation but continued with Robin and her husband joining the Board in 2009, and serving as Co-Chairmen since 2013. “It’s always the same thing for both Dick and me. We want each and every person with MS and their loved ones to be able to attend the program that was so valuable to us.”
“Whether you make a donation, volunteer at an event, spread awareness, or serve on the board, it’s a significant contribution to the organization. I want to say a very special thank you from the bottom of our hearts to all our supporters. You’re helping people with MS reclaim their lives.”
Can Do MS is moving rapidly to implement innovative and effective initiatives to transform more lives. While there is no cure yet for MS, our programs have helped and will continue to impact thousands of people in many ways.
We cannot do this alone. With your support, we can give people living with MS and their support partners the tools they need to improve their lives. Together, we’ll build a community of people like Robin, who demonstrates so well how far the can do spirit can take a person!
“I was bitter,” said 34-year-old Arwen Sherman, upon learning of her multiple sclerosis diagnosis. “I had no idea what I would be able to do with my life.”
Flashback to six years ago. Arwen Sherman was working a job she loved at a Reno hotel and caring for her two young children when her world was flipped upside down. She suffered two strokes within six months of each other that not only left her partially wheelchair bound, but also brought a startling diagnosis; Arwen had MS.
“It was scary. I wasn’t expecting that and was absolutely terrified. I had to quit working; I didn’t know if I would be able to walk again. I didn’t even know if I would be able to care for my children.”
Despite these challenges, Arwen never gave up. Through physical therapy and a can do attitude, she achieved her first big accomplishment: just one week out of the hospital, Arwen stood up from her wheelchair and walked the final 20 yards in an MS walk event.
That was just the beginning. In 2010, Arwen heard about Can Do MS through her local National MS Society Chapter and attended her first JUMPSTART® Program, a one-day educational program that enables people with MS and their support partners to become active co-managers of their health and well-being. “I wanted to learn more about MS and do something with myself other than just be a girl with MS,” she explained.
Feeling empowered, Arwen attended a second JUMPSTART Program in 2014, where she learned about Can Do MS’s Adaptive Ski Experience at Vertical Express - Squaw Valley, an on-mountain ski fundraiser held at five different mountains across the US. Skiing has been a rich family tradition for Arwen since she was little, but she hadn’t been back on the slopes in 13 years. “I was totally excited! I used to ski, I wished that I could still ski, and then I thought, maybe I can!”
I AM going to be able to do this!
When Arwen arrived at Squaw Valley for Vertical Express in March of this year, she said, “I was so nervous. I was scared that I wouldn’t be able to do it, and I was worried that my kids would laugh at me.”
This wasn’t the case.
The day started with Arwen and her adaptive ski instructor discussing her needs and performing balance tests. Adaptive skiing can mean using special equipment to help you ski down a slope, or it can also be skiing with an instructor who understands the limitations of people with disabilities.
“I was so impressed with the instructors and how they took care of me. They took the time to really understand my needs. I wasn’t sure if I needed adaptive equipment or not, but we decided to try without it. We started on the bunny hill with basic ski skills, but soon it started coming back to me, and I realized, I AM going to be able to do this!”
“Then, I wanted to try something a bit harder.” She and her instructor took on the challenge and moved on to a blue, intermediate run. “Silly me,” she laughed, “I spent the whole time falling down, but it was a blast. You can’t really say that you’ve skied until you’ve fallen down!"
The highlight of Arwen’s day? Skiing with her children. Logan and Madeline have both been skiing for more than four years, but Arwen has never been able to watch them, until that day. It felt so great to be back on skis, but being a mom, being able to see my kids ski and being with them was so awesome… I don’t have the words to describe it.” Her children were also two of her biggest supporters. “They stayed with me and encouraged me the entire time.”
No doubt, this won’t be her last time skiing. “After this event with my family, we’ve already decided we’ll be doing it again next season!”
Life with MS is hard.
“Life with MS is hard. I’d love to give it back. But now that I know I CAN ski again, it’s really opening my eyes to all the different activities I can try. Through programs like Vertical Express, Can Do MS helps people see what they still can do with their lives.”
Arwen also encourages others with MS to take advantage of local adaptive programs and to get outside and be active. “If you used to ski, or have never skied and are interested, try it! You can’t lose anything from trying it. If all else fails, you can enjoy the day and make a snowman.”
What’s next for Arwen? “Maybe I’ll try skydiving.”
Did you know? People with MS avoid winter sports like skiing because they can be expensive. However, because of the donations and grants we received, Can Do MS was able to provide Arwen and 24 others adaptive skiing opportunities in 2015 at no cost to them.
Help us continue our work in 2016. Please consider a donation today.
Olympian Jimmie Heuga conquered mountains like no one else. Diagnosed with multiple sclerosis at the age of 26, Heuga became an advocate for incorporating wellness strategies and regular exercise into his daily life to combat the disease and in the process founded Can Do Multiple Sclerosis. It’s been 30 years since Jimmie made that commitment, and over the years, thousands of people with MS have been inspired by his revolutionary can do spirit.
It is that can do spirit that inspired Dan Melfi, who was diagnosed with MS five years ago, at 58 years old.
At the time, he was working in the marketing and public relations department at the Denver International Airport – a man who was generally active and “always on the go”. “I wanted to fill my days experiencing life – perhaps on a hike, or a bike ride.”
That all changed on the day Dan was diagnosed with MS. “I would take my dog for a walk,” he explains, “and would start tripping on the littlest crack in the sidewalk. Then I started doing the infamous foot drop. And then I began to get fatigued. It was very frustrating.”
It was then that Dan, while getting a physical, mentioned to his physician that he was having trouble crossing his legs. His doctor told him to see a neurologist as soon as possible.
“I went to the doctor, and he put up the MRI scan, and I saw these little black bumps in my brain. I asked, ‘Is that a brain tumor?’ I remember that the entire room was filled with people, and I was told that I had multiple sclerosis. I had no idea what multiple sclerosis was. And with my sense of humor, I said, ‘I refuse to have a disease that I can’t spell.’ Everyone laughed and suggested that I learn how to spell it.”
It’s been five years since Dan walked into his physician’s office with a slight limp. Looking back in that moment of his diagnosis, Dan knew what he had experienced in his past life wasn’t going to be the same in his present or future life. But, he didn’t want to just sit on the couch, and let life pass him by.
Luckily, Dan heard about Can Do MS. He and his wife, Karen, attended the flagship CAN DO® Program, a four-day intensive educational program that empowers people living with MS to take control of their lives within the context of their MS. “That was life-changing. It was tremendous,” reveals Dan. “Karen was able to learn about spousal support, which was huge for her. And I was made aware of the impact my actions were having on my family. I hadn’t realized how self-centered I was beginning to get. Everyone really cared. They were there for absolutely everything…not just mentally, but also physically.”
This past February, Dan attended Can Do MS’s Adaptive Ski Experience, which was held in conjunction with our Vertical Express on-snow fundraiser in Vail, CO. At this event, participants were able to use adaptive equipment and learn how to ski from specially trained ski instructors, helping participants focus on what they can do. “There I was, going down the hill, and it was a kick in the pants!”
“The folks at Can Do MS are always pushing us to do things we wouldn’t even think about doing. Everybody is always asked to donate to some cause or another. ‘Donate to this. Donate to that.’ And a lot of times, people donate money but don’t see the results. Please look at me. You’re seeing the results!”
During this season of giving, please consider making a contribution to help more people like Dan attend our comprehensive programs – all offered free of charge to participants and their support partners. You CAN make a lasting impact on the health and well-being of many more people living with MS, so that they can continue to live a full life.
The greatest gift of all time is time.
In the spirit of Thanksgiving, we would like to give a HUGE thanks to our volunteers. If it was not for their hard work, we wouldn’t be able to do what we do! We decided to spotlight two of our in-office volunteers this month. Let us introduce you to who we like to call ‘cinnamon roll chef,’ Dick Woodrow and ‘ms. can do promoter’ herself, Mary Grisedeck.
Dick and Mary worked a combined 332 hours at Can Do MS this past year– almost 40 days– for free!
“My favorite things about volunteering at Can Do MS are (a) the wonderful service that it provides to MS patients and their support partners, (b) the quality and dedication of the employees, and (c) the high level of energy that one can feel throughout the office,” Dick explains.
We have volunteers help with everything we do here at Can Do MS from stuffing folders with information for our next JUMPSTART®Program to assisting at our events, like our recent Autumn Benefit in New York. One day you could be calling program participants to remind them about the upcoming program they registered for, then the next day, you could be sitting at the conference table with our staff discussing new ways to organize our database.
Mary says, “at Can Do MS, I have found the people very, accepting, flexible and patient teaching me, especially the computer stuff. The hard work that goes on here is all for such a great cause. I just love volunteering at a place that is making a difference in people’s lives!”
Most of our tasks involve the start to finish of our programs and events. We always need extra help with prepping (making calls to confirm program participants), implementation (setting up for events), and wrap up (calling program participants to complete their program surveys). We also team up with several individuals across the nation who host their own Can Do MS third-party events. These events range from a casual dinner party to an evening of painting while sipping wine.
We do our best to find tasks that best fit the strengths of each of our volunteers, like Mary whose favorite thing to do is to spread the word about Can Do MS and find businesses to donate items for our fundraising event auctions.
“I enjoy going to the stores and talking about Can Do MS because so many people end up telling me they know someone with MS. Then, you get into a conversation about that person or the disease itself. Overall, I learn a lot and it gets me out in the community. It is also inspiring to see how generous people can be.”
Volunteering is often so meaningful to people who try it, that they are inspired to share their experiences with others. So, again thank you Dick for all your time, your smile and of course your famous cinnamon rolls you’ve given us this past year. Mary, we thank you for your positive spirit, and all the time you spent talking to others about the good work we do. Thank you both for sharing your volunteer experience.
You CAN Get Involved
If you are interested in volunteering your time with Can Do MS, please fill out our volunteer information form. We look forward to working with you to help provide more educational and experiential programs for people living with MS, and their support partners. Last year alone, Can Do MS impacted over 10,000 people, and with your help we can impact so many more. So, when you and your loved ones are looking for ways to give back this year, think about giving the gift of time to Can Do MS.
Happy Thanksgiving from all of us here at Can Do MS! Click here to volunteer!
Once unable to pick up a guitar, much less stand on a stage and sing, David Osmond is performing and pursuing his passion with multiple sclerosis. That’s what we like to call living the can do spirit. Can Do MS is proud to honor the inspiring David Osmond, a singer-songwriter and member of the world-famous Osmond family, as the 2014 Can Do Award recipient at our Annual Autumn Benefit in New York later this month.
The Can Do Award honors an individual who demonstrates the can do spirit and is making a significant contribution to improving the lives of those living with MS.
“We are elated to present David with our 2014 Can Do Award,” said Heidi A. Heltzel, president and CEO of Can Do MS. “He demonstrates how essential positive thinking is to overcoming hardship every day. His incredible performances are a sheer inspiration to the entire MS community.”
David Osmond has show business in his genealogy as part of the Osmond family, and continuing in the family business was a natural progression. Being the 4th son of Alan and Suzanne Osmond, David grew up in the spotlight, as his father Alan was the oldest, and therefore the leader of the Osmonds (Alan, Wayne, Merrill, Jay, Donny, Marie, and Jimmy).
Every family has challenges to overcome, and the Osmond Family is no exception. When David’s father was diagnosed with multiple sclerosis (MS), it led to his early retirement from the performing Osmonds. Shockingly, David was forced to put his rising musical career on hold, due to his own diagnosis with MS at age 26. Initially in a dark place after receiving his diagnosis, David adopted a motto from his father, who also has MS, “I may have MS, but MS does not have me.” David, now with a new lease on life, serves as a symbol of hope to the MS community as he continues to raise awareness for MS by speaking and performing nationwide with a positive message of overcoming adversity.
“I’m beyond humbled and honored to receive the Can Do Award,” said Osmond. “I know firsthand how essential role models are in overcoming difficulties in life and I’m excited to serve as one in the MS community.”
As David continues to successfully overcome the physical challenges of MS, his professional life and personal life have also flourished. David was chosen to host a BYU Produced Television competition Show, “Starbiz,” that benefited numerous Non-Profit Charities, and he was featured on FOX’s hit TV show American Idol in 2009. On the acting front, he reprised the role of Joseph at the Pittsburgh Civic Light Opera, and also had the chance to recently perform alongside artists such as David Archuleta, Take 6, The Jonas Bros, Stevie Wonder and The Eagles. David was also voted the “2011 Artist of the Year” from Stereofame.com. With the successes and challenges that he has faced, David begins each day with the determination and appreciation of his family legacy.
This year marks Can Do MS’s 30th Anniversary. We ask you to come celebrate our can do legacy and commit yourself to helping more families with MS. As we look back over the last 30 years, we reward ourselves on all the lives changed through our programs and we look forward to even a brighter future.
IF YOU GO…
Thursday, October 23, 2014, at New York’s Metropolitan Club
6 p.m. – Meet & Greet with David Osmond
7 p.m. – Cocktail Hour & Silent Auction
8 p.m. – Three-Course Dinner, Evening Program, Awards, Voice Auction and Live Performance by David Osmond.
After 11 years of co-hosting MS Global with Tyler Hamilton in an effort to raise money and awareness for MS, the Hamiltons selected Can Do MS as their 2014 beneficiary. Bill Hamilton spoke with Jennifer Myers, Director of Marketing and Communications at Can Do MS about the 2014 event in Asheville, NC why they chose Can Do MS, and what he loves about the event.
Can Do MS: Why did you and Tyler create MS Global 11 years ago?
Bill Hamilton: “Actually it was Tyler’s creation, not mine. He had been promoting fundraising rides for the MS Society for a number of years and introduced the idea of taking a fundraising group to Europe to ride some of the routes he raced in the Tour de France. I believe 2003 was the only year it was produced for the MS Society, in subsequent years it was the premier fundraising event for The Tyler Hamilton Foundation. In 2008, the foundation was closed but MS Global has continued as an independent event ever since under the direction of Tyler and me. “
Can Do MS: MS Global lives on after so many years, what is it about Can Do MS’s mission that motivated you to select us (Can Do MS) as the beneficiary for the 2014 MS Global?
Bill Hamilton: “The mission of MS Global has always been two-fold, to support MS research and to help people living with the disease. For the past six years we generated revenue exclusively for an organization that facilitated MS research. It was time to focus on our other mission, to help people living with MS. Tyler and Jimmie Heuga were good friends, and we always looked forward to the day when we would support the organization he had founded. That time is now, and we take great pleasure in helping Can Do MS continue with the mission that was Jimmie Heuga’s dream.”
Can Do MS: The timing is perfect as we are celebrating our 30th Anniversary and the legacy of our founder. We are thrilled to celebrate this milestone with seven days of muscle-busting rides, breathtaking scenery and fun to support our cause. Tell us what you look forward to every year with this invitation-only bike event?
Bill Hamilton: “We look forward to taking our riders to places most have never seen, to help them experience one of the best weeks of their lives, to see them make new lifetime friends, and to generate significant revenue for our beneficiary. Among our riders are those who have MS, as well as others personally impacted by the disease, but the shared passion that brings us all together each year is to help people living with MS."
Can Do MS: So let’s talk about the riders, the minimum fundraising amount expected for one to raise is $3,700…how do you motivate people to fundraise for MS Global?
Bill Hamilton: “Our fundraising riders sign a pledge, backed up by their personal credit cards, to collect $3,700 in contributions for Can Do MS. This alone is motivating because no one wants to make up a shortfall with their own funds. But we go further and share with them the details of other rider’s successful fundraising campaigns, provide them with their own fundraising web pages through Can Do MS, provide incentives to encourage them to exceed their minimum pledges, and employ the carrot and the stick to get the riders motivated and keep them on course.”
Can Do MS: I love it, sounds like you build a competitive comradery with the riders. Why do you think most of these riders come back year over year?
Bill Hamilton: “Because they always have challenging rides in an exciting new venue with old and new best friends. It is a well-planned and supported event where they will experience one of, if not the, best weeks of their lives. They appreciate the ride leaders (RLs), our strongest and most experienced riders, who sacrifice their desires to ride hard and fast in order to ride with riders of lesser strength and ability, to lead them, to encourage them on, and to provide help (PUSH) where needed. Without our corps of RLs and the experience they bring to the event, an aggregate of 62 years, MS Global would not be the premier bicycle tour that it is today, and probably would have ceased to exist years ago.”
Can Do MS: Sounds like a truly unique experience with the perfect amount of TLC. Let’s hear you sum up MS Global in one word?
Bill Hamilton: “AWESOME!”
Can Do MS: MS Global has led riders up and over the Alps of France and Switzerland, the Pyrenees of Spain, and the Dolomites of Italy. Participants have enjoyed the Rocky Mountains of Colorado, the peaks and valleys of Northern California, and the mountain gaps and notches of Northern New England.
Why did you choose North Carolina for this year’s event?
Bill Hamilton: “Years ago Tyler raced annually in the Tour DuPont, and Asheville and the Blue Ridge Parkway were often included as stages in this week-long event. So we knew there were challenging riding routes in a beautiful part of our country where most of our riders had never been.”
Can Do MS: What ride route are you most looking forward to in this year’s event?
Bill Hamilton: “Most of our riders will attack the ascent up the hills and mountains…I survive them. With all of our riding routes from Asheville going in one direction, UP! I will be in survival mode all week. However, I will always know that after suffering big time to get to the top of a climb, my payback will be in the descent.”
Can Do MS: Yep, the reward is the downhill. Speaking of directions…where is MS Global caravanning next year? Give us a hint.
Bill Hamilton: “Most likely Arizona. Sedona, Flagstaff, the south rim of the Grand Canyon. This year everyone will become spoiled by the luxury of staying the week at a single hotel. In Arizona, we will be on the move a lot.”
Can Do MS: Heading west, huh? That is something we’ll look forward to in 2015. But, as you gear up for Asheville, what will you, Tyler, and other riders leave feeling with after pedaling in this seven-day bike event?
Bill Hamilton: “The satisfaction of a mission accomplished! Great riding in a great venue with a great group of people, and successfully stuffing our favorite beneficiary’s treasury with a ton of money.”
Can Do MS: Well said! We are so grateful for you and all the riders who take time out of their busy lives to make a difference for people with MS. Cheers to all of you and good luck with the first climb on Sept. 28th! We will be hooting and hollering for you here in Colorado. Let the countdown begin… 24 days until MS Global 2014!
Individuals can support the MS Global effort by making an online gift through Can Do MS at www.mscando.org/msglobal or sending a check to Can Do MS offices at PO Box 5860, Avon, CO 81620.
Interested in RIDING FOR A DAY? Raise $500 and pedal with the pack. Contact Bill Hamilton directly at firstname.lastname@example.org.
We are very excited to introduce our newest member to the Can Do Multiple Sclerosis team. Meet Angie Swim. Angie just joined our Development Department as the new Development Associate, and we asked her a few questions to get to know her better.
What are you looking forward to in your role here at Can Do MS?
I am thrilled to join the team at this exciting time, where we are providing more and more innovative programs across North America that are jam-packed with educational materials and presented by some of the best medical professionals specializing in MS.
With the development team, I hope to help spread the word and continue to contribute to the awesome work that has been happening at Can Do MS over the past 30 years. I can't wait to be a part of the Can Do MS community and meet everyone else who is part of this group, too.
Do you have a personal connection to Can Do MS’s mission?
Yes, my father. After years of experiencing the symptoms of MS, including exacerbations in his hands and feet and severe migraines, he was diagnosed with MS in 2011. When I learned about Jimmie Heuga’s mission and his can do spirit, I wanted to know everything about Can Do MS. I spent hours on the website learning about Jimmie's story and his philosophy of encouraging a healthy and active lifestyle. The thing that struck me most about Can Do MS's programs is the equal attention they give to support partners. MS is a team effort, and I'm so excited to be a part of this team.
What is one thing people don’t know about you?
I can name all of the States in alphabetical order in less than 20 seconds.
What are your favorite hobbies/activities?
Yoga, horseback-riding, reading, anything mountain-related and Game of Thrones.
What does our founder’s legacy mean to you?
It's a way of life. Jimmie didn't let what happened in his life stop him from doing what he wanted to do. He didn't let his circumstances define his future. Perspective is everything; it can take you to the highest limits you never could imagine were possible, or it can crumble your hopes and dreams. What I've learned in this life is that with faith and determination, anything is possible. Jimmie's legacy helps me realize that I am in control of my outcomes. Life will always have its ups and downs, but as Jimmie said, "each day is a new day," so let's follow Jimmie's lead and start focusing on what we can do.
How are you living the can do spirit?
I thoughtfully try to live the can do spirit in my day-to-day life. I continuously push my limits. My current motto is to "lean into something that is uncomfortable, because that's when transformation occurs." With that in mind, I always like to try new things. Here are some examples:
1) My move to Avon, CO (I'm a flatlander from Kansas so moving to 8,000 feet elevation with seven winter months out of the year is definitely going to be an adventure).
2) Snow-shoeing (one of my top five Colorado experiences to date).
3) Oysters (did not enjoy the slime so much, I won't be trying those again).
Some days are harder than others to keep to this mindset. I have to consciously pull myself out of the daily grind and remind myself that each day is full of new possibilities. It's up to me--and only me--to push myself outside my comfort zone to get to experience them. It's extremely important for me to remove the words “I can't” from my vocabulary and replace them with "can do!"
Can Do Day campaign is coming up in September; what is your pledge?
I've always wanted to do a 30-day commitment to yoga. I've done 8-10 days here and there, but I have never pushed myself to all thirty consecutive days. So, on Can Do Day, I pledge to hit my 30th day in my yoga practice.
Have you shared your Can Do Day Photo Pledge? You can today! Tell us what you can do on September 22nd.
Resilience means knowing the difference between saying “this is what is,” and asking “how can I be my best in this situation?” Resilience means adapting – and then moving forward. Learning the difference between acceptance and adaptation was a turning point for Ross Braver.
Ross had his first onset of MS in 1987 during his sophomore year studying film at Northwestern. He stepped off a curb and suddenly realized he was seeing double. A neurological exam was inconclusive. The neurologist told Ross that, though it could be the first onset of MS, it could be hundreds of other things as well. At that time there were no disease modifying therapies, and the neurologist advised Ross not to worry about it and to continue his studies, and life, as before.
“I am very grateful for that doctor. As a self-described hypochondriac I would have spent my youth concerned about what might be wrong with me, instead of living another 18 years not worrying about it before I was officially diagnosed.”
Before hearing about Can Do MS, Ross thought he was doing everything right in managing his MS. He has an amazing neurologist at UCSF, attends a local support group and is constantly researching information about emerging therapies. However, it wasn’t until attending our in-person programs that Ross discovered a whole new way of thinking about, and living with, MS.
Ross attended our one-day JUMPSTART® Program with his partner, Pedro, in 2013. This past March he attended our four-day CAN DO® Program with his mother, Barbara. After the program, Pedro got many pages of notes from Barbara describing their experience and sharing the can do I AM. I CAN. I WILL. promise Ross made during his life-changing experience at the CAN DO Program.
I AM more than my MS.
“When I returned from the CAN DO Program, Pedro framed the mantra ‘I AM. I CAN. I WILL.’ and put it on a dresser. Every morning I look at it and say my can do promise for the day.”
Reading his promise every morning reminds Ross to retake control of his life. Starting the day off with positive reinforcement helps Ross remember that MS is not his identity. He is more than his MS!
I CAN do more than I think I can.
“I always hated the expression I am doing the best I can. I wondered – is this disingenuous? Am I really doing the best I can? One day I realized that, much like my MS, my ‘best’ is not constant. My best some days is better than my best on others. Once I gave myself the freedom to be imperfect, to have bad days, and not be in control, I realized that ‘doing my best,’ was something I could accomplish. My MS is always changing and my commitment is to adapt to my new challenges.”
Ross has a full-time job as Assistant to the City Manager for Communications in San Jose, CA. He knows he has to plan carefully how to use his energy each day. An example of his adaptation was installing a bench in his shower so he could sit down.
“Once I had the bench, I wondered why I didn’t think about this before. Again, it goes back to the mindset of adapting instead of accepting.”
Ross also found a new way to stock his kitchen. Through talking to a delivery courier, he found Google Shopping Express, a service that delivers groceries directly to his house: another successful adaptation!
I WILL do the best I can today.
Before the CAN DO Program, Ross completed a pre-survey where he circled “strongly disagree” under the statement, I can do anything I set my mind to. These words rang a different tune for Ross during the program, when Can Do MS Programs Consultant Roz Kalb, empowered him by saying,
“'Adaptation' is more realistic and empowering than 'acceptance'.”
Ross realized he was spending too much of his time trying to accept his changing body. Today, he is adapting to his MS, which is helping him cultivate a sense of accomplishment and confidence which helps him achieve more.
Ross had the opportunity to meet one-on-one with a psychologist during the four-day program.
“I was just blown away by that session. When I met Peggy for just an hour she had the ability to figure out what I was struggling with, deliver information in a compassionate way and then take the time to research and share with me a solution to my problem. I was leaving the program with a specific plan, which had never happened at any other MS program I had attended.”
Since the program, Ross has been working on his communication with those closest to him. He is being more open with Pedro and his parents about his disease and how it affects him daily. He is so grateful for his Can Do MS experiences that he has decided to give back in a way that shares our mission with others in his community. Ross has sponsored our video, The CAN DO Journey: Empowering Lives to be featured on CreaTV San Jose cable TV, giving us the opportunity to spread the can do spirit to more families living with MS. Thank you Ross!
Together, we can help others with MS live happier lives. Give Can Do MS that opportunity by spreading the can do spirit with your donation today!
Don’t take life for granted.
Live life to the fullest.
Pay it forward.
These are three common sayings we often hear, meant to encourage us to live full and positive lives. Ironically, we sometimes even take these words for granted and pass them off as everyday expressions. A week ago on Memorial Day weekend, I was deeply struck with the importance and magnitude of these statements.
I have the privilege of working for Can Do MS, helping to create lifestyle empowerment programs for people living with MS and their support partners. Recently, we reintroduced “adaptive experiences” as an element of our events, where people with MS and their support partners have the opportunity to participate in outdoor adventure activities, such as golf and skiing.
Lori Bryant, who was diagnosed with MS two years ago, and her husband Randall were invited to participate in the first adaptive golf program at the Cut and Slice Golf Event on Memorial Day at Beaver Creek Golf Club. As part of the program, Can Do MS offered one-on-one instruction with a PGA professional and physical therapist for each adaptive player, while playing a full round of golf for the day.
Lori has been a golf enthusiast for years, playing on a regular basis with her husband and two sons. Since her MS diagnosis, Lori has not been able to play at the same level she did before, and she stopped playing the game that she loved so much. When she learned about our adaptive golf program, Lori jumped at the chance to participate in hopes to improve her game by learning some new tips and tools.
“I’m here to figure out how to play golf again. I was a pretty avid golfer with a low handicap. And then when I got diagnosed, the golfing stopped. I’m hoping I can get my life back in terms of how I do on the golf course.”
At first sight, you would not assume Lori lives with a chronic disease, one that she struggles to cope with on a daily basis. But after the first few minutes of talking with Lori, I caught a glimpse of the frustration she’s been experiencing.
“The emotions I’ve been feeling are mixed: a combination of being very excited to get some tools and see if I might be able to play golf again; yet, apprehensive that I might not be able to do this.”
Enter Alice Plain.
Alice Plain is a PGA Golf Professional from Vail Golf Club who volunteered to provide one-on-one instruction during the adaptive golf program. Alice provided Lori with fundamental tips and tools on how to help improve her golf swing. By the end of the day, Lori was striking the ball with more power and accuracy, improving her overall game.
“There were probably ten things I learned from Alice that we are going to practice back at home. There are some great tools and instruction that helped me on the course today to play better than I have before.”
Besides sharing a love for the game of golf, Alice and Lori have another commonality. Alice also lives with MS. The first-hand understanding of the disease that Alice possesses was invaluable for Lori. She was able to help Lori recognize that she can continue to live her life fully with MS, even if she has to adjust and adapt the way she does things on a regular basis – including playing golf.
Alice is a past Can Do MS program participant, and she used the philosophies that she took away from the CAN DO® Program to mentor and support Lori.
“After attending the CAN DO Program, I learned a lot about the ways I could help myself. The program helped me realize that I need to make the most of every day, whether I’m playing golf, working, biking or hiking. Volunteering for the adaptive program is a way that I can pay forward what I took away from Can Do MS,” said Alice.
With the tools that Alice and Can Do MS were able to provide to Lori, she and her husband Randall are feeling optimistic and excited to apply those skills to their everyday lives.
“I feel like I now have the ability to get part of my life back. I need to focus on what I can do, and live life to the fullest.” – Lori, Living with MS
“When MS comes along, you spend a lot of time trying to find your new normal. Our ‘normal’ before had been playing golf together all the time. Today was a sign that that ‘normal’ could come back.” – Randall, Lori’s husband (Support Partner)
We all get caught up in our jobs, going through the motions of our tedious daily tasks to complete a project. Sometimes we lose sight of the larger picture of what our everyday tasks build at the end of the day. I am fortunate to have first-hand experience of that final product, and it has inspired me to share my own can do promise today:
I AM grateful for the people I work with and for my job at Can Do MS.
I CAN make the most of each day and live life to its fullest potential.
I WILL take the philosophies of Can Do MS, and pay it forward to help others in need.
Molly Murphy, 28, is one of those people willing to shred for us. Diagnosed with multiple sclerosis just weeks before our Vail Vertical Express event on Saturday, February 8th, instead of hiding from her diagnosis, Molly decided to ride to make a difference. Raising $3,000 in only 48 hours was enough to surpass her goal and become Vail’s top fundraiser thanks to the support of 48 donors, which included friends, family and co-workers.
Molly’s diagnosis was not going to take away her passion for life.
“I want to focus on the positive things about my diagnosis and do what I can to support the MS community, which I’m now a part of.”
Molly’s diagnosis came as a complete shock. After having severe pain in her eye, she visited an optometrist who referred her to a neurologist. The neurologist told her this pain could be caused by three possible diagnoses: a brain tumor, a virus or MS. After having an MRI Molly finally got the phone call a week later that would change her life.
“In a weird way I was relieved; I looked at MS as the better of three evils when compared to a brain tumor or a virus. I let my boyfriend, family and friends know right away, and the support was amazing. If it wasn’t for their support, I think I would have been overwhelmed with my diagnosis.”
Molly was at a turning point.
“I decided very quickly that MS wasn’t going to be me; it is just a part of me, and it isn’t going to keep me from living the life I want to live.”
For Molly, one of the first steps in that process was getting involved in Vertical Express for Can Do MS.
“I work at the hospital here in Vail and have been involved in fundraising events for many different diseases, but never for MS. I was excited to be a part of something positive that was based in my town but also helped people all over the country live better lives with MS.”
Instead of letting her diagnosis overwhelm her, Molly decided to do what she could to benefit others living with MS. As a Vertical Express participant, she raised enough money to send two program participants and their support partners to one of our one-day JUMPSTART® Programs this year.
While her journey with MS is just starting, it’s inspiring to meet someone who lives fully with the can do spirit. Molly doesn’t know the course her MS will take, but she has learned early that she can control her attitude about MS and continue to focus on what she can do, which is priceless.
“Not much has changed since my MS diagnosis besides taking medication twice a day. I’m still snowboarding whenever I can, I go to the gym five days a week, and I continue to eat healthy. I’m also very thankful for the support my family and friends provide.”
Molly is an amazing example of how one can empower themselves to focus on the positives and not let the fear of the unknown bring them down. Thank you Molly for your inspiration, strength, generosity and for sharing your can do story. See you on the slopes next year for the 2015 Vertical Express for Can Do MS!
When Suzanne Vondrell decided to make a career switch from hotel management, she had no idea what her next step would be, but, she was ready to take a leap of faith in a new career. After discovering that Can Do Multiple Sclerosis was hiring she did some research on the nonprofit and found it to be a place she could share her compassion in helping others. Looking back, Suzanne can’t believe that this year will mark her seven year anniversary with our organization.
“When I interviewed, what sold me was that I could tell how passionate every employee was about the mission. For me, it wasn’t just a job it was work that allowed me to make a real difference.”
Within her first year Suzanne was making a huge difference. She was slowly taking ownership of our flagship four-day CAN DO® Program. Even today, her empathy for the participants applying to this particular program is incomparable.
“I really enjoy getting to know our participants over the months leading up to our CAN DO Program. Sometimes it takes years for someone to apply and commit to attending a four-day program with their support partner. It’s amazing to see how they open up and really come to trust me during the process.”
One of the ways Suzanne earns their trust is through honesty.
“I don’t deceive them. I tell them this program isn’t a vacation. It’s work and you have to be committed. But, after they put in the work they’ll never forget it.”
The other key part to the CAN DO Program is the ‘behind the scenes’ logistics that goes into running a program that is as individualized as this one. Suzanne compares it to building a house.
“You gather a group of professionals with their specific expertise and they work together towards a common goal. Each professional realizing that the quality of their work has an immediate impact on their co-workers and the ultimate goal of creating an individualized plan for each participant to live their best lives possible with MS.”
This interdisciplinary approach began when our founder, Jimmie Heuga, was creating it 30 years ago. He knew it took a strong team of health professionals in one place at the same time to be able to provide what participants now call ‘perfect medicine’. Suzanne is one of our staff members who was lucky enough to meet Jimmie.
“Jimmie was a special person, I’m so grateful that I had the chance to work with him. What he created for managing MS can be applied to everybody, whether living with a disease or not. I remember he would always say, being disabled is no excuse to be unhealthy, I try to remember that every day.”
It’s important to keep in mind that it’s not just the program participants who leave with a new outlook on life. Suzanne’s favorite part of the program year after year is watching lives change right in front of her eyes.
“I am continually inspired by our program participants. During every program, I feel that my appreciation for life is rejuvenated and I try to pass that on to those who attend any of our programs.”
As Can Do MS celebrates its 30th Anniversary, it’s important to recognize and thank the people who play a vital role in executing our programs. While it is a team effort, every team needs leaders and Suzanne is one of them. Thank you Suzanne for all your compassion and hard work over the past seven years. Here’s to another seven!
In honor of MS Awareness month we wanted to share Suzanne’s I AM. I CAN. I WILL. Can Do Promise to help inspire you to share yours on our website!
I AM proud of my accomplishments.
I CAN go home each night knowing that I've made a positive difference in someone else's life.
I WILL continue to be passionate about my life and the nature that surrounds us.
Click here to share you I AM. I CAN. I WILL. Can Do Promise and to see other staff members.
When Dan Melfi heard the words “you have multiple sclerosis,” the first thing that entered his mind was the fear of being inactive, “If I can’t continue being active, I’ll go crazy!”
Thanks to our founder Jimmie Heuga, staying active is a huge part of one’s daily routine when living with MS. Dan attended our CAN DO® Program in 2011 and has been using the tools and tips he learned from the program to stay active. As a Colorado native, skiing had been a sport he always enjoyed, but had given up because of MS. Last weekend, Dan summoned the courage to go ski again for the first time in 10 years. He was invited to participate in a pilot adaptive ski program hosted by Can Do MS, after just a few short hours on the slopes he was hooked again.
Dan felt the wind on his face again, he was rejuvenated as he carved down the ski runs. Dan was skiing just like everybody else on Vail Mountain that day. However, it took an enormous amount of courage both mentally and physically to get on the slopes that day.
“When Can Do MS first reached out to ask if I would like to take part in an adaptive ski experience in Vail during their Vertical Express fundraising event, I was excited but also very anxious; I wondered if I could still ski.”
Dan learned quickly that he could. The Vail Adaptive Program is one of the best in the country, offering different devices such as ski bikes, sit skis and outriggers, to help people with disabilities continue to ski. Their private instructors have a wealth of knowledge to teach students how to adapt themselves to the special equipment.
“My left leg is much weaker than my right leg, and as I was sitting on the ski bike, my left leg started to give out, and I took a pretty good fall. The instructor helped me adapt with something as simple as a bungee cord that connected my left leg to the ski bike frame to help keep me from dragging my foot. To my surprise, I didn’t fall again!”
Dan had a smile on his face the entire day for many reasons. But, his happiest moment was a culmination of being outside, enjoying the majestic beauty of the Rocky Mountains and experiencing the euphoric feeling of skiing, something he thought he would never be able to do again.
“I got to be out in one of the most spectacular areas in the world – the mountains in winter time! I felt the fresh air on my face and was surrounded by a different caliber of people, ones with a thirst for being active in the mountains. For the day, I was one of them again. Although I never forget that I’m living with MS, it was a nice change of pace to feel a part of something outside of my MS and daily routine.”
Dan is retiring in just a few short weeks after 26 years as Director of Terminal Operations at the Denver International Airport. He is looking forward to enjoying life outside of his busy work schedule.
“I want to focus on myself and become physically stronger. Skiing this past weekend has me so motivated. My ultimate goal would be to ski independently without an instructor, with my wife and kids. We can just enjoy the beauty of the mountains, appreciate each other and ski at our own pace.”
For those contemplating trying any activity for the first time or in a long time, Dan says it best:
“Don’t be defeated between your ears. Be open, don’t be afraid of the challenge, and I guarantee you’ll have a great experience!”
Thanks for your inspiring words Dan, we enjoyed skiing with you!
Can Do MS is celebrating two important anniversaries in 2014. First, it marks the 50th Anniversary of our Founder Jimmie Heuga winning an Olympic medal. On February 8, 1964, Heuga and U.S. Ski Team teammate, Billy Kidd, were the first American men to win medals in Alpine skiing. This year also marks Can Do Multiple Sclerosis’s 30th Anniversary of empowering people living with multiple sclerosis (MS). To capture the spirit and history of Heuga's legacy in both skiing and the MS community, we sat down with friend and teammate, Billy Kidd, and Heuga’s oldest son, Wilder.
Interview conducted by:
Scott Robinson, Can Do MS Marketing & Strategic Partnership Representative on 1/2/2014.
Can Do MS: What does the 50th Anniversary of winning medals in the ’64 Olympics mean to you?
Billy Kidd – (BK): Well, it’s a reminder that just a few short decades have clicked by since Jimmie and I won our medals. I think Jimmie, myself and several of us who were in those 1964 Olympics haven’t looked back that much in our lives because we’ve always tried to live in the present and look ahead. But this particular anniversary is a significant reminder.
Wilder Heuga (WH): It’s the kind of thing I feel a lot of pride about - thinking on what Billy and my dad were able to accomplish: to be the first men to be able to do it for America - it’s just awesome.
Can Do MS: When the idea for the first Heuga Express (now Vertical Express for Can Do MS) in Alyeska, Alaska came to fruition in 1984, do you think Jimmie had any idea that it would continue for 30 years and raise over $11 million?
BK: Jimmie was very creative, and he characteristically thought outside the box. His fresh thinking applied not only to the fundraiser in Alaska, but to his entire approach on having MS, which literally changed the medical world’s way of treating MS. With that first Heuga Express in Alaska, Jimmie rallied teammates, competitors and friends from the Olympics, including Jean-Claude Killy, Stein Ericksen, Phil and Steve Mahre and others. Coming together for that fundraiser helped start The Jimmie Heuga Center for MS (now Can Do MS). Jimmie was especially proud that the initial seed money came from President Gerald Ford.
Can Do MS: Can Do MS will be celebrating its 30th Anniversary this year. What do you think Jimmie would be most proud of?
WH: Just the amount of people he’s been able to help and that people are going out on the slopes and still having a good time while raising money for people with MS.
BK: I don’t think I can say it better than Wilder. Jimmie would be extremely pleased with the fact that he helped so many people, despite the fact that there was doubt that an exercise program could help anyone who had MS, not just for an Olympic athlete.
Can Do MS: Tell me about one of your most memorable times skiing with Jimmie.
WH: One of my favorite things was when he got into his sit-ski. He would just cruise on that thing and would go so fast! Once he wanted to go to the back bowls in Blue Sky Basin at Vail on a powder day. He and his instructor took a pretty gnarly fall. He was the first to hop back up (laughs), and he was ready to go. Meanwhile, his coach was still getting himself back together, and my dad was just looking at him like…let’s go!
BK: Definitely, it was the 1964 Olympics because those few minutes dramatically changed our lives. Neither of us realized at the time how it was going to impact our future. Winning a medal would have been much less significant if either of us had won by ourselves. Winning our medals together brought us closer and linked us forever, and our medals brought global attention and credibility to the U.S. Ski Team.
Can Do MS: When someone asks you about the legacy of Jimmie Heuga, what do you tell them?
WH: I think he has two legacies: one in ski racing, and one in MS. I think he has been able to help so many people, virtually every person who has ever had MS, by incorporating exercise into their lives.
BK: As Wilder said, Jimmie made two significant contributions. First, to U.S. skiing and ski racing. But far beyond the sport of skiing, Jimmie made an even greater contribution because he literally changed the way the medical community thought about and treated MS.
Can Do MS: Wilder, what’s the best piece of advice your father gave you?
WH: When it came to skiing, he wasn’t adamant on giving me tips on being a great racer; what he taught me was a love for skiing.
Can Do MS: Billy, I have to ask you, with the Olympics coming up, who’s your American favorite for winning the most medals in skiing?
BK: Well, I think the U.S. Team is going to be the best at the Sochi Olympics. It’s exciting to have so many Americans on top. My focus is on Bode Miller, Ted Ligety, Julia Mancuso and now, Mikaela Shiffrin. They’re the best in the world. It’s disappointing that Lindsey Vonn will miss these Games. In Steamboat, we’re very excited because the world will see about 15-20 athletes from the Steamboat Springs Winter Sports Club compete in Sochi.
Can Do MS: If you could tell Jimmie one thing right now, what would you tell him?
BK: I’d tell him how grateful we all are. Those who knew him really well, like his three boys, me, coach Bob Beattie, Jimmie’s wife Debbie, teammates Bill Marolt, Buddy Werner, Chuck Ferries and others were really grateful for knowing him and for being able to spend time with him. Also, for people who didn’t know Jimmie, but who just heard Jimmie’s story, who are grateful for his life and for the hope he inspired. Jimmie’s story and message are inspirational for everyone: “Don’t feel sorry for me, I just have MS. Some people have real problems, like, maybe you can’t balance your checkbook!”
So you can see that Jimmie kept his sense of humor. He also often said, “Do the best you can with what you have…never give up!”
WH: That’s a difficult question…I would tell my dad I feel very fortunate for being in his life and being his son. I think as far as being grateful, I have a friend in New York who called me one morning after being at a party with a woman who was my age, 24 or 25. She told him that her hero was my dad. Obviously, my friend said “Oh, that’s my friend’s dad!” It was an important moment for me to have a person that young who knew my dad’s story say he was her hero.
Can Do MS: What are you guys most excited about for the February 8th Vail Vertical Express event?
WH: I’m pretty excited about the run Vail is re-naming for the day to Jimmie Heuga Express. I’m excited to ski down that. I always love talking to people because a lot of them have met my dad, and I usually get some pretty cool stories out of that.
BK: I think February 8th is going to be a combination of reflecting on what Jimmie did for skiing and also what he did for the world of medicine and for MS. Because the 50th is such an important anniversary for us as skiers and as friends of Jimmie’s, the date will be an opportunity to reflect on what a significant contribution Jimmie Heuga made to the world.
Wilder Heuga is a film student at Chapman University in California. Billy Kidd is the Director of Skiing at Steamboat Ski Resort. Wilder’s younger brothers, Blaze and Winston, are following in their father's footsteps, and ski tracks, attending the University of Colorado at Boulder. The Heuga boys and Billy Kidd will be joining us on the slopes for our Vail Vertical Express event on February 8th.
Note: Jimmie Heuga died on February 8, 2010, 46 years to the day after he made Olympic history.
To celebrate with Can Do MS this year at our Vertical Express events, click here.
Valarie Brunjes, 36, smiles as she recalls her experience with Can Do Multiple Sclerosis.
“It hits me in the heart and leaves me speechless.”
Her eyes widen as she breaks into an easy laugh. Val admits she’s rarely at a loss for words. She glances to the wheelchair she’s used for the last three years.
“It’s hard to explain. It’s overwhelming. I mean, I walked. I walked!”
Val’s story with multiple sclerosis began 10 years ago, when the cries of her newborn daughter woke her from a deep sleep. Val’s legs were numb. Always an active person, she thought she’d tweaked something.
But the numbness didn’t go away. Within a few months, her diagnosis was definitive: Val had MS. Her daughter was six months old. Some might say it was bad timing. Val calls it a blessing. If she hadn’t been diagnosed, Val says she would have rushed back to work. She can’t imagine how much she would have missed.
“For the first time I could remember, I had time. Time to be present and to watch my daughter grow. Not many people can say that.”
Over the last year, Val attended two programs led by Can Do MS.
“Can Do MS changed my life.”
Can Do MS brings together world-renowned neurologists, nutritionists, exercise physiologists, psychologists and occupational and physical therapists. People living with MS and their support partners receive undivided and individualized attention from more than one expert who knows what it takes to thrive with MS.
Our founder, Olympic skier Jimmie Heuga, understood the importance of treating the whole person—body, mind and spirit. And, he understood why we should support the families and friends whose lives change when their loved ones receive this diagnosis.
Next year will mark the 30th Anniversary of Can Do MS. Jimmie didn’t face his own diagnosis thinking about what he couldn’t do. His motto was to focus on what you can do.
Your donation helps us provide individualized, “perfect” healthcare.
The waiting lists for our programs grow each year for one reason alone: they dramatically improve lives. When MS patients like Val spend more days enjoying life and less time lost in complex medical care systems, everyone wins.
Recently, Val worked with an exercise therapist at a CAN DO® Program. When they moved toward the pool, Val was just excited about getting out of her chair and enjoying the water. What happened next shocked her.
Val walked—for the first time in three years.
“I’m not overly emotional. But the burst of energy I got while walking was so intense and complex. I was excited, amazed—even sad that it had been so long since I walked. I never expected it. My Can Do MS therapist was magical.”
Since being introduced to Can Do MS, Val has a plan that’s unique to her and her circumstances. Today, she knows that a little self-care goes a long way. She practices standing up, using her washing machine for support. She strives to do a little better each day, just as she learned in the program.
Can Do MS changed her outlook on everything. Val laughs as she describes how this different mindset has made even her messy basement feel manageable.
“I’ve ignored my basement for years because it was overwhelming. But now I know: I can do it! I just need to take it one box at a time.”
Your donation to Can Do MS supports programs that are based on science with proven results. With your support, we can give people living with MS the tools they need to improve their lives. Together, we’ll build a community of people like Val, who remind us how far the can do spirit and a sense of humor can take a person.
Val flashes a smile. She’s always upbeat, but in this moment, there’s something more.
“Can Do MS gave me back some big pieces of life that I thought I had lost.”
Can Do MS knows that an overwhelming number of people could benefit from our programs. But like Val, until there’s a cure, we’ll give people the tools to manage it “one box at a time.”
Celebrate 30 years by helping us move people off of our waiting lists and into our programs. Every dollar counts. Please, donate today.
My father, Jimmie Heuga, was diagnosed with multiple sclerosis 21 years before I was born. He could still walk with the help of a walker, and he also had a motorized scooter when he was too tired to walk. The first couple years of my life were just like anyone else’s. My dad would drive me to and from school, and pull my brothers and I on a sled behind his ATV. We even went skiing a couple of times before the disease really started to catch my attention.
It was hard watching someone I cared so much about lose his physical ability. It was even harder watching all my friends interact with their dads in ways I couldn’t. Soon enough, I started realizing my mom was taking care of three young children on top of a fully grown disabled man. I was probably seven years old when I realized that my entire family, not just my dad, was going to be affected by this disease for the rest of our lives. It was extremely difficult for me as young child to understand why this happened to my family, but I soon learned I wasn’t alone.
My dad couldn’t always be there for me, but I learned the tough way that it was the thought that counts. He always wanted to be with me. Looking back, this is what matters to me most. He was the best father he possibly could be. My dad was always filled with an amazing amount of knowledge and experience that he passed on to me. Even to this day, it has guided my thoughts and actions. Although I missed out on the important cliché things, like playing catch or getting tucked into bed, I’ve grown mentally stronger through the power of his words and beliefs, along with the support of the wonderful MS community.
I have attended the CAN DO® Programs since I was four, and they have helped greatly in my understanding of this disease. The CAN DO Programs are much more than an informative session for people with MS. To me, it’s a learning experience for families to share stories and learn different perspectives about the disease. Most importantly, Can Do MS is a community of people that can lean on each other in times of distress and rejoice in times of celebration.
At the heart of the program is the idea that we can overcome any situation. My father’s stories were critical in my understanding of this lesson. It is the greatest life lesson I’ve ever learned, along with loving my family unconditionally. It’s taught me to stop complaining or making excuses because there is no excuse for falling short of your goals. Anything can be accomplished with a positive can do attitude. Although my father has passed, this amazing outlook on life will never die. Thanks to the Can Do MS community, it will be passed on for generations to come.
In honor of Thanksgiving, I wanted to share a story of the last time I got to spend the holiday with my dad. At dinner, my dad would always share a good story. It’s hard for me to remember most of his stories because he never told the same one twice. But, as our family sat around the dinner table, there was an unsaid knowledge that this would be our last Thanksgiving dinner together. And still, it was a beautiful moment because we all realized how much Jimmie Heuga had overcome and what he had created in his life’s journey. When we put him to bed later that night, he asked us to always stay committed to his organization. Now, I have a new goal to work towards as I hope to support Can Do MS in whatever way I can while spreading my father’s can do philosophy. In honor of Thanksgiving, I challenge you to think about the people who have shaped who you are today and to thank them.
Jimmie Heuga founded Can Do MS on the belief that everyone living with multiple sclerosis deserves a chance to live their best life possible. One piece to achieving this is to set goals and focus on what you can do instead of what you can’t. Each year at our Autumn Benefit in New York, we honor an individual who has a major impact on the lives of people living with MS and who share the can do spirit. This October we are pleased to honor Clay Walker, Founder of Band Against MS (BAMS) and multi-platinum recording artist. Clay’s can do spirit is a wonderful example of how to use fame for social good.
Clay dreamt of becoming a country music star in his teenage years when he saw other Texas natives Mark Chesnutt and Tracy Byrd making it to the national level.
“After I saw Mark and Tracy do it, that gave me even more desire because I knew both of them,” Walker recalls. “Watching them do it led me to believe that if I kept trying hard, then maybe I could get my break too.”
Clay’s dream came true in 1993 when his single “What’s It To You” soared up the billboard charts to No. 1! However, his booming music career was put into question when he was diagnosed with MS in 1996.
“If you’d asked me when I was diagnosed that first day if I would still be alive, I would have said ‘No’ because that’s what the doctors said,” Clay admits.
Coincidentally, Jimmie and Clay were both diagnosed at the young age of 26 when they had the world at their fingertips. Very much like our Founder, Clay’s diagnosis came at a pivotal time in his life when his career in country music was exploding. Clay decided his diagnosis wouldn’t keep him from achieving his dreams. Since 1993, he has sold over 11 million albums, had 11 No. 1 hit singles, four RIAA platinum and two gold certified albums under his belt. Currently, he is out supporting his critically acclaimed ninth studio album She Won’t Be Lonely Long and is feeling better and stronger than ever.
“Here I am, and actually, I’m probably healthier than I was [when I was diagnosed.]”
Determined to use his fame for good, Clay founded a nonprofit for people living with MS called Band Against MS (BAMS). It was established in 2003 with the goal of helping others living with the same disease he has battled since 1996. BAMS provides hope for those living with MS and educates them on the importance of managing their disease, which aligns with Can Do MS’s mission to provide lifestyle empowerment programs to families living with MS and improve their quality of life. It is because of his dedication to helping others along with his commitment to raise awareness for MS that he was chosen as our 2013 honoree.
“We are honored and excited to present Clay with our 2013 Can Do Award,” said Heidi A. Heltzel, President and CEO of Can Do MS. “Clay’s charisma, personality and charitable work with BAMS makes him the perfect recipient of our Can Do Award. “
We aren’t the only ones excited about honoring Clay; he is too!
“Receiving the Can Do Award is an honor, especially from Can Do MS, an organization that continues to renew hope for people living with MS,” said Clay. “I believe you can live a healthy and active life with MS by focusing on what you can do. I hope our combined efforts will inspire others to live their best lives possible with MS.”
It’s inspiring to see someone with millions of fans all over the world dedicate his time and fame on improving the lives of others. Next time you need a little inspiration, throw on one of Clay’s hit songs and remember if he can do it, so can you!
Tickets are on sale now! Join us Thursday, October 24, 2013, at our 28th Annual Autumn Benefit in New York in honoring Clay Walker. Come celebrate with champagne, amazing food and hear Clay’s story in person!
Most of us spend our childhoods believing that our parents are superheroes – that they’re indestructible, can do anything they want, and can save our lives simply by putting a band-aid on a scrape. This belief often disappears quickly as we grow up. Unfortunately for some of us, it disappears for a much different reason. Amy Sleeper’s dad David was diagnosed with multiple sclerosis when she was a junior in high school, even though he had been suffering from its debilitating symptoms for years before that. Within a year, he went from being one of the top finishers in his age group during a local mountain-bike race, to struggling to finish it. He endured years of doctors’ visits, being told that nothing was wrong with him, that he was just getting older. Finally, the doctors diagnosed him with MS.
“We were relieved to finally have a diagnosis, and although it wasn’t something that I went around telling everyone, it wasn’t something that I ever lied about or hid from anyone who was curious. When I went off to college, I even came home for Thanksgiving with a brand new tattoo – the MS awareness ribbon!” Amy said.
In 2012 David learned about the flagship four-day CAN DO® Program in Denver, CO, and invited Amy to join him as his support partner. Already an active volunteer at the Can Do MS office, Amy participated in this life-changing program and began spreading her can do spirit as a daughter, support partner, and humble advocate for Can Do MS.
“Since the program, I’ve met a handful of young adults just like me whose parents are living with MS. I take the time to explain how amazing my experience was at the program and let them know about all the resources Can Do MS offers. It’s my way of spreading the can do philosophy.”
Can Do Day is all about sharing that philosophy! It was created to honor Can Do MS founder Jimmie Heuga (1943-2010) on his birthday and to raise awareness for MS. During September supporters are encouraged to share their pledge on our Facebook page of what they can do on Jimmie’s birthday. On September 22nd, they post a picture of what they are doing to help spread the can do spirit.
Amy’s pledge is inspired by her father as well as her experience at the program.
“I left the program with a new appreciation for life and the realization that even though I may feel indestructible at 25, I could lose that feeling for a number of reasons. I have always tried to live my life to the fullest, but this program and all of the amazing people I met have taught me to take nothing for granted. I see my dad in a new way – I admire him every day for the strength he puts forward to accomplish all of his goals, and I only hope that I can grow up to be as strong as he is.”
Amy’s pledge starts by participating in a five-mile mud run on September 21st. On Can Do Day, Amy is going to spend the day raising awareness for MS and our programs by sharing her new appreciation for life through email and social media. Most importantly, Amy is going to spend quality time with her Dad over the phone to let him know how much she loves him and that his strength is her source of inspiration.
Join Amy on Can Do Day, September 22nd, to make your own Can Do Day pledge! Help honor Jimmie Heuga on his birthday by sharing your can do spirit with your friends and family by raising awareness for MS. Visit the Can Do MS Facebook page today to share your pledge!
When life throws you a curve ball, setting goals can help you knock that curve ball out of the park. At our four-day CAN DO® Program we ask all the participants to identify what their goals are on the first day of the program and again on the last. When Vivian Gallegos attended our 2012 CAN DO Program in Vail, CO, she had no idea the program would be preparing her for the inevitable curve ball coming her way.
“It was the most informative four days of my life and it was great because my best friend Shawnna attended as my support partner which brought us closer than we could ever imagine!” Vivian exclaimed.
Vivian hoped to achieve her post-program goals of putting her health and well-being first and learning how to better listen to her body. Our Programs Consultants provided the tools, courage, and education to accomplish these goals.
“Since the program I’ve been going on hikes, walks, fishing and picnic lunches. I find that helps me achieve both of my goals from the program, staying healthy and putting myself first. Before I would always be focusing on my family and work, now I realize there needs to be some “me” time to keep my mind and body happy.”
Luckily, Vivian didn’t have to work on her goals alone; her best friend Shawnna was at her side assisting and encouraging her. One night after the program, they were just about to begin one of their walks around the neighborhood. It seemed a bit cool for Vivian, so she ran back into the house to grab a sweatshirt.
“I was in my room putting on my sweatshirt and what I call an ‘MS Hug’ (exacerbation) hit me and hit hard. I wasn’t able to move my body and was having difficulty breathing. I was stuck and terrified since this was one of the most intense ‘hugs’ I’d experienced.”
After waiting several minutes for Vivian, Shawnna became concerned and went in to check on her. Armed with knowledge she gained from the program, she instantly knew what was happening to Vivian and was able to provide her the support she needed.
“Even though there wasn’t anything Shawnna could do to make it go away, it eased my mind knowing that she was in the room and because of what she learned at the program she really understood what was happening to me.”
After about 15 minutes the worst part was over and Vivian was able to move and breathe sufficiently to lie down and try to relax. She experienced severe pains in her back along with breathing issues for about three days, but has since made a full recovery.
After the program, Vivian started a support group in her hometown of Leadville, CO. She was putting herself first, while thinking of others who might have similar needs.
“Meeting such an amazing group of people at the program that talked about how to deal with MS on many levels helped me realize that I wanted a community like that in my hometown, so I could keep learning from others.”
Vivian realized life is full of challenges and one of the best ways of meeting those challenges was by setting goals. She also realized that support from a best friend or a community is crucial. The next time you face a challenge, remember her story, set a goal for yourself, and seek support if necessary. Focus on what you can do and then do it!
Josée Ménard found new ways to cope with her multiple sclerosis diagnosis after she discovered her can do community.
Josée experienced years of unexplained symptoms before she was diagnosed with MS in 2004. The symptoms peaked when she temporarily lost her vision and suffered from severe exhaustion.
The next six years Josée tried to “fix” her MS. “Throughout my life I was the type of person that identified a problem and figured out how to fix it,” said Josée. I did the same thing with my MS.”
Josée proceeded to build her knowledge of MS symptoms. After hearing about Can Do MS through a local support group in Vancouver, she was ready to experience the can do community by attending our one-day JUMPSTART ® Program.
Communities educate, protect and most importantly, they can empower. Josée was not only grateful to find an ongoing social community through Can Do MS, but also a safe place to ask questions and learn more about her condition with people just like herself. It wasn’t until Josée’s first Can Do MS program that she and her husband Ray found a community they could call home.
“After attending my first JUMPSTART Program I left with new friends, new information, and the feeling that every day was a new day. I needed to stop trying to fix my MS and learn how to live with it,” Josée said.
The JUMPSTART Program also had a powerful impact on her husband Ray.
“Ray walked out of the first support group session completely blown away. It was the first time someone had asked him how he was doing and the support group community gave him some much needed TLC.”
After receiving a taste of what Can Do MS could offer, Josée and Ray wanted more, so they started attending our monthly webinar series. A year had passed since their JUMPSTART Program experience and they were lucky enough to attend a second one. Can Do MS’s one-day JUMPSTART Program returned to British Columbia.
“Each program we attended refreshed our can do attitude and kept providing new tools and information to help me manage my progressing MS.”
This past May, Josée and Ray attended our four-day CAN DO® Program in Denver, CO at a time when they needed it most. A few months before the program, Josée’s vision, cognition, fatigue and motor skills were degenerating faster than she had ever experienced; she had no idea how she would manage her changing body.
Throughout those four days, Josée and Ray received personalized attention, more in-depth education, and lifestyle plans from many compassionate individuals. Their can do community evolved into something so much deeper at this critical time.
“It was amazing the one-on-one time that was provided with a neurologist, a psychologist and all the other medical professionals. I could tell they truly cared for Ray and (me) and were there to sincerely help us. I never had that feeling from any of my specialists back home. Finally, we weren’t just one of 30 patients a doctor was seeing in a day, for fifteen minutes each, after waiting months to get an appointment. We had instant answers from true MS specialists.”
After the program, Josée realized her life was okay. It was okay to use a scooter in public. It was okay to wear braces on her legs in public. It was okay to challenge her medical team to provide the care she needed, but, more importantly, it was okay to ask for help.
For every Can Do MS program Josée and Ray attended, there’s been a new high. She has made some huge changes that enable her to live better with MS. They have moved into a one-story home, so as her MS changes, she can adapt more easily. Josée has also found a way to re-ignite her passion for sailing through a local adaptive sailing program back home. She will forever hold on to her can do community, as it is now a part of her everyday life.
“MS has a huge weight associated with it and Can Do MS helps lift that weight.”
Josée is no longer struggling to fix her condition; now she adapts to live successfully with her MS.
To find a program near you click here.
Life often hinges on twists of fate. Only a few years ago, Julie Hare was a full time elementary school teacher. Her husband, Stephen, had a management position at a local Napa Valley winery. In 2009 Julie was diagnosed with multiple sclerosis and unfortunately, the diagnosis wasn’t the only unwanted surprise. The economic downturn caused her teaching job to be eliminated and Stephen was informed by his new boss that his services at the winery would no longer be required. Things seemed so bleak that they agreed “we had nowhere to go but up.” And up they went!
While Julie was attempting to face and accept her new life with MS, she sought out and found support in family, friends, and various MS programs. Julie attended our one day JUMPSTART® Program in 2011 and realized that a key part to living a full life with MS was focusing on what you can do.
“It was amazing to see Can Do MS put together a panel of medical professionals who truly cared so much about each one of us in the room. They not only gave us the tools to live better with MS, but also taught us how to implement those tools in our daily lives,” said Julie.
It wasn’t just Julie who changed through our programs. Stephen explains, “The JUMPSTART Program changed my attitude on what it means to be a support partner. I realized we were in this together”.
Our JUMPSTART Program kept them motivated to attend their local support group along with attending our monthly online webinar series. One evening in November 2011, just a few months after attending our program, Julie and Stephen had an eye-opening experience and discovered how they were going to work together to pursue what they could do.
“One evening, while reflecting on gratitude and our recent life-changing events, a photo on our family room wall took on new meaning. The photo was taken in the early part of the 20th century and was of Stephen’s maternal grandfather in a playful boxing stance. The idea emerged that we could, as a couple, join our mutual passions, Stephen’s for the California wine industry and mine for wanting to give something back to the MS world. Counter Punch Wines was born. That photo on the wall would become the art for our future wine label.” Julie explains.
Their goal for Counter Punch Wines is to create great wines that are produced from California’s best grape growing regions and to donate a portion of the profits back to organizations that help “counter punch” the effects of MS. Throughout the process of starting the winery and learning how to manage Julie’s MS, they have learned that by helping others they are also helping themselves.
“Sharing a venture that we are passionate about and that somehow feels larger than us has given us another avenue to share our lives with one another. Let’s face it; MS is a bear of a disease that alters one’s life dramatically. The blessing is that as I developed MS, mine and Stephen’s relationship has become stronger. We have been married close to 30 years and during life’s challenging times; once again, we turned toward, instead of away, from each other” explained Julie.
The Hare’s story is an amazing example of a family coming together during difficult times and deciding to focus on the positives. They are proud to be working together and combining their passions to give back to the MS community that has given so much to them. The next time your life’s path hits a speed bump, remember to focus on what you can do!
We’re excited to announce that, during the month of June, Counter Punch Wines will donate 20% of all online sales to Can Do MS. Use the code CanDoMS at check out to ensure 20% of your purchase goes to support our lifestyle empowerment programs. As a bonus, you will also receive 10% off your purchase as well. Visit www.counterpunchwines.com.
Alex Ng has always had a passion for changing lives. As a PhD student, one of his goals was to do the best work he could on topics that motivated and inspired him. It wasn’t until his postdoctoral research on muscle function and fatigue with Jane Kent-Braun, his mentor at the time and Can Do MS Programs Consultant, that he began pursuing an interest in helping people with multiple sclerosis.
In 1994, Jane recruited Alex to become a member of the Can Do MS programs team by inviting him to observe our four-day CAN DO® Program. This opportunity led Alex to a 19-year career with Can Do MS, where he has presented dozens of presentations on Exercise & Fatigue for people living with MS and their support partners. This past year, his paper documenting positive change in participants’ experience after attending our CAN DO Program was accepted for publication in the Disability and Rehabilitation Journal.
“I was completely blown away with how effective the CAN DO Program was and how inspiring Jimmie’s (Heuga) story was,” said Alex. “It was my job to analyze the data and establish its statistical significance. This was something that was outside my typical research area and it admittedly pushed me out of my comfort zone. However, it was important that the work be completed because there are plenty of companies with fancy websites with claims about how well their programs work with no data or evidence to back up those claims.”
It’s a rewarding experience to be inside the walls of a CAN DO Program and see how it affects everyone involved, not just the participants. Alex has witnessed many people overcome their fears or inexperience at our program over the years. These experiences have invigorated him.
“I knew how amazing the CAN DO Program was, and I wanted to know if there was statistical evidence to support our claims so we could help more people living with MS.”
Alex isn’t always focused on graphs and numbers. When asked to identify his favorite thing about the CAN DO Program, Alex had a heartfelt answer.
“I love meeting and interacting with everyone at the programs. Each year I participate it renews my motivation and drive that the research I’m conducting may be truly helping people live better with MS.”
Alex even finds that all of our programs are a source of inspiration for his research. He is currently working on validating the Physical Exertion Scale we teach
our participants at our program to ensure that it’s the best way for people to manage the amount of energy they are using to exercise. Our programs aren’t the only thing that inspires Alex to continue his research. Our founder, Jimmie Heuga, is another source of his motivation.
“I attribute the entire field of exercise and rehabilitation in MS to Jimmie. It wasn’t until the mid 90’s that a study came out proving that what he had been teaching was in fact true.”
Alex is referring to the study on exercise and MS sponsored by the National MS Society and Can Do MS, which validated Jimmie’s philosophies. Because exercise and MS was such a hot topic, many of the people involved in the study were actually CAN DO Program alumni! This helped others in the MS care management field realize that the power of exercise does in fact enhance life with MS. Jimmie changed the way the MS field viewed and treated MS and that’s when the CAN DO Program was born.
Often in life we are told to follow our dreams and the people who inspire us. Sometimes that is easier said than done. Next time you find yourself debating your calling, remember Alex’s story as proof that you can fulfill your passions through your work, by focusing on what you can do.
Thank you Alex for all your support and knowledge you’ve given us for the past 19 years!
Alex Ng, PhD, FACSM, currently lives in Wauwatosa, Wisconsin and he is the Associate Professor in the Exercise Science Program at Marquette University. For more information about Alex’s CAN DO Program outcomes research, please visit our website at http://www.mscando.org/can-do-ms-research/.
Before attending our CAN DO® Program in 2008, Alice Plain was on the right path to living fully despite her recent diagnosis. She was the Head Pro at a local golf course, which is a very physically demanding profession. Alice, who started her golf career in 1996, was diagnosed with MS in 2006. After her diagnosis, Alice could have chosen to move on from her Head Pro position, but she didn’t. In fact, she did the opposite and found ways to increase her involvement with the Pro Golf Association (PGA). In 2012, she was the first woman to earn the Bill Strausbaugh Award for excellence, awarded by The Colorado PGA West Chapter for her work in mentoring young golf professionals.
Alice used the philosophies we teach to aid her in improving her own health along with mentoring other aspiring golf professionals, all while supporting local war veterans and children interested in learning to golf.
“After attending the CAN DO Program I learned a lot about the ways I could help myself.”
One of Alice’s biggest battles with MS is the numbness in her legs. After the program she realized that it was better for her to walk while playing a round of golf than to ride in a cart.
“I enjoy walking when I play golf, it gives me more time to socialize and relax with the people I’m playing with.”
That wasn’t the only thing Alice learned.
“The CAN DO Program helped me realize that I need to make the most of every day, whether I’m playing golf, working, biking or hiking.”
Alice has taken this philosophy and run with it. A few years ago she started mentoring young aspiring golf professionals. The goal of the program was to prepare them for a successful career in golf. Instead of giving them mundane tasks, Alice decided to give them as much responsibility as possible.
“I wanted the young professionals to take ownership of their chosen career and make the most of their time while I was mentoring them. Which is why I gave them more responsibility than usual, the more hands on they were the better. I looked at myself more as their coach than as their boss.”
Alice’s dedication to helping others never fades. Throughout the years she has spearheaded programs to bring local children out for action packed days of lessons and rounds of golf. Along with teaching children to golf Alice also works with the Vail Veterans Program to give veterans a chance to get out on the golf course.
“It’s amazing to see how playing golf can bring a smile to people’s faces and allow them to forget about their worries. This is a gift that golf has given me and I love passing that on to children and veterans.”
One of the best things about our jobs here at Can Do MS is getting to meet and stay in touch with our program participants. Some participants are so inspired by what we do, they choose to give back to others in their community. For many, battling MS seems like a full time job, however, after attending one of our programs they realize that MS is only one part of who they are. Some choose to focus on improving their own health, others choose to exceed expectations in the workplace and others choose to give back to their communities. Alice’s can do story embodies all three of these. On behalf of Can Do MS and all the children, veterans and young PGA professionals we thank you for being such an inspirational and dedicated mentor to our community here in the Vail Valley.
28 years ago our founder Jimmie Heuga and a group of his Olympic skiing buddies decided they were going to ski one million vertical feet in 24 hours to raise seed money to start Can Do Multiple Sclerosis. They called it the Jimmie Heuga Express. Each of them needed to ski a daunting 100,000 vertical feet, which is no easy task! Over the next 27 years the event has evolved to include skiers, snowboarders and telemarkers of all ages and abilities and is hosted at world class ski resorts around the US.
It’s now known as Vertical Express for Can Do MS and it still continues to be our signature fundraising event series. Why? Because everybody chooses to participate to help people living with MS. It takes a village of our supporters to plan Vertical Express, including sponsors, volunteers, participants and most importantly the local event directors.
For the past eight years Crystal Mountain Resort Vertical Express has been run by an amazing family of five, the Stewart’s. Dan, Terri and their three daughters got involved because the company Dan worked for decided to sign on as a sponsor back in 2001.
“I worked at a radio station and we were approached by the event director Christy Anna to become a sponsor, to me it was a no-brainer and we signed on immediately.”
After participating as a sponsor for four years their now great friend, Christy Anna approached Dan and Terri and asked if they wanted to take over as event directors.
Terri explains their decision to take on the role of event directors best.
“I had volunteered in the past and had heard speakers who were CAN DO® Program alumni and I really liked the mission and philosophy they learned at the program. Also for me personally, I prefer to volunteer in organizations that provide direct service rather than funding for research, so that also kept me interested. This was also something we could take on as a family and I knew that anything we did needed to include our kids as well so they could learn about the different challenges people face and the strengths people bring.”
After that there was no looking back. The Stewart’s took the event head on and raised over $500,000 for our lifestyle empowerment programs over the last eight years. When we asked Dan what comes to mind when he hears Vertical Express, his contagious ear to ear smile broke out and he exclaimed:
“It’s a lot of hard work but in return it’s a lot of fun! In the end it’s all about getting this amazing group of caring people together to honor one of Jimmie’s favorite things to do, go skiing; all while raising money for programs that change people’s lives.”
Terri’s response wasn’t much different.
“I look forward to seeing the teams and enjoying the camaraderie among teams and the little competitive side to everyone. We’ve had many great speakers over the years so hearing the different stories of people living with MS has been amazing and inspirational.”
At the end of the day the program participants are what this event has always been about. The Stewart’s have never forgotten this, which is why they made such amazing event directors. Skiing on the slopes with great friends and enjoying conversation over some Après drinks is just the icing on the cake for them. In the end everyone is there to spread the can do spirit and to help us reach more people living with MS along with their support partners.
It’s been an amazing eight years and we speak for everybody that has been involved with the organization (program participants, program consultants, office staff, volunteers and sponsors). Thank you Dan, Terri, Hannah, Meghan and Grace for your hard work and amazing energy! Together we’ve helped thousands of people discover they are more than their MS.
Learn more about Vertical Express and other upcoming events by clicking here.
Interested in becoming an event director at your local ski resort? Email Vicki Flynn, Director of Development at email@example.com or call 970-926-1275.
Every once in a while we are lucky enough to meet someone who takes the can do spirit to a whole new level. Last May Bob Hughes attended our four-day CAN DO Program in Vail, CO for the second time. His sense of humor and overwhelmingly positive attitude became contagious. Whether he was telling stories of his five-day backpacking adventures in the Sierra Mountains, or cracking jokes, he could bring a smile to a room full of people in an instant.
Bob was first diagnosed in 1988 when he was 32 years old and like most, he went on quest to learn everything he could about Multiple Sclerosis. He found out about our CAN DO Program in 1992 through a friend and decided to take a chance and travel to Vail to further his search for the best ways to manage his MS.
“I decided to take the bull by the horns and see how far he would throw me.”
As soon as Bob got to our CAN DO Program he knew he’d made the right choice.
“When I first met Jimmie (Heuga), I was still struggling mentally and physically with managing my MS. He opened my eyes when he said ‘WAKE UP Bob! There is still so much you can do!’ And ever since then I’ve never looked back.”
After returning home from the program Bob’s friends instantly noticed a new “glow” surrounding him.
“I know, I realized there is so much that I still can do.”
Shortly after the program Bob flew out to California to complete a five-day backpacking trek throughout the Sierra Nevada Mountains with a group of adventurous people who were also living with a disability.
“I’ve always enjoyed nature and being athletic so this seemed like a perfect fit, I enjoyed it so much I went out and completed the trek again a few years later.”
With so much that had changed in the MS care management field since 1992, Bob decided to attend our CAN DO Program again in 2012.
“I looked at it as an opportunity to refresh my can do spirit and an opportunity to meet new people and share my experiences and learn from theirs.”
Once again, the program didn’t disappoint and it couldn’t have come at a better time. This past December, Bob suffered a stroke. The recovery process is a long and hard one that is only made more difficult by his MS.
“Right after the stroke I had no movement of my left arm, I’ve been working hard and am now able to move it and pick things up. The can do spirit I gained from the program has played a huge role in my recovery process, I feel blessed to have been instilled with the can do spirit”
Bob is doing much better today. However, he is still working his way through the recovery process and takes it one day at a time.
It’s amazing to meet someone who has been through so much, but who still keeps a positive outlook on life and cares so much for those around him. We all have someone in our life like Bob who can light up a room by just walking in, so next time you see your “Bob” be sure to say thanks. We thank you Bob, for never giving up and spreading your can do spirit to everyone you meet!
For more information on our programs please click here.
First and foremost, Happy New Year! We hope you and your loved ones had a wonderful holiday season. This month we wanted to focus on how you can help us spread the word about our 2013 programs and events using the simple yet powerful tools of email and social media. This is an easy and effective way you can help us reach more people living with MS in 2013!
In 2013, empower yourself and help us reach more people living with MS! Our goal for 2013 is to offer 100% of our programs free of charge and increase our program participation; we need your help to reach this goal, whether you are a program participant, supporter or both. Share our E-newsletter with friends, comment on Facebook about a program of ours you recently attended, share our can do stories, post or tweet a picture of you reaching one of your can do goals and tag us, forward our fundraising event emails to friends and share the registration links to our monthly webinars! We’re all about empowerment at Can Do MS, so this year focus on what you can do to spread the word about our events and share the power our programs have given you!
Every month our E-newsletter goes out to thousands of our supporters, and you know it’s filled with information about our upcoming programs, events and currents news in the MS community. Did you know there is an option to forward that E-newsletter? Help us spread the news! Share our emails with friends, co-workers, family, etc by clicking the “forward email” link at the bottom of our E-newsletter. Did you know if each person forwarded our emails to just three people we’d instantly reach over 40,000 new people who might have a connection to MS?
You can also share our news on your Facebook or Twitter account. Social media (Facebook, Twitter, LinkedIn, etc) allows individuals to share what’s new in their life with a network of friends. Research shows the average user has 120 friends. Imagine if every person who received our E-newsletter also shared it on their Facebook page, we’d have the potential to reach over 1.5 million people. That number doesn’t even factor whether any of your friends decided to share your post with their friends too. You can share our E-newsletter by clicking the social media icons at the top of the email.
If you already follow us on one of our social media accounts – Facebook, Twitter, LinkedIn, Google+, YouTube, or Pinterest we encourage you to share your experiences with us. Did you recently attend one of our programs and really enjoy it? Or maybe you participated, or will, in one of our fundraising events like our upcoming Vertical Express for Can Do MS? Let us know by posting your Can Do MS moments and tag us! In doing so, one of your friends might decide to learn more about us because they noticed their friend had a great experience. If you haven’t started following us yet, then make sure to click on the social media links above to connect with us. Our goal is to gain 1,000 new friends on both our Facebook & Twitter accounts in 2013. You can help us reach and surpass that goal with the click of a button.
Recently, Rachel celebrated her youngest daughter’s graduation from college with a degree in Community Health. It’s an accomplishment Rachel was thrilled to witness and a career focus that she was proud to have influenced. Diagnosed with Multiple Sclerosis (MS) when her youngest child was a teenager, Rachel’s illness has had a profound impact on her life and that of her family… not the least of which is a shared desire to help others faced with difficult health challenges like MS.
Today, Rachel will tell you that all things happen for a reason and that she and her family have turned what could have been a devastating disease into a very positive life experience. Of course, approaching Christmas 2001, Rachel had no idea of the difficult journey ahead. She and her husband had raised three beautiful children. She loved her job teaching preschool… so much so that she was attending graduate school for an advanced degree in early childhood education. She was active, driven, outspoken and happy.
At 45, life was truly idyllic, until the very unexpected happened.
“I remember I was playing with the neighbor’s dogs when I felt a twinge. My right side went numb,” Rachel began. “So, I went to a chiropractor and things went back to normal for about three years. Then it happened again… only this time it didn’t go away and in October of 2004 I was diagnosed with MS.”
At first, Rachel, lacking knowledge, assumed it was a death sentence. But her family’s encouragement and her own strength of will simply wouldn’t allow her to give in.
“We were in it together,” she explained
“I tried to continue to lead my life as I always had, but I found I was no longer able to play with the kids at the preschool… getting down on the carpet was just too much. As I began interviewing for jobs, people looked at me differently. Try as I might to believe otherwise, my life had changed dramatically, but more importantly, I had changed profoundly, allowing my dreams and ambitions to fall by the wayside.”
By 2012, Rachel realized she needed more. More information. More inspiration. More hope. She had attended a Can Do MS JUMPSTART® Program years earlier and turned to Can Do MS once again.
“The four-day CAN DO® Program taught me how to best take care of me, both physically and mentally. They gave me the tools to advocate for myself… to be my own voice. It was important because I realized that I had something that I needed to share, that others could benefit from my experience.”
This program was a defining moment
Today, Rachel still spends her “spare” time teaching, albeit her students are older and her message more mature. In between flights across the country where she advocates for the rights of the disabled, she travels the Western U.S. “speaking out and speaking up” to women’s groups. “Women see me and realize that if I can do this… they can do anything.”
With the giving season just around the corner we want to take a moment this month and give thanks to someone very important to our organization, our founder Jimmie Heuga. It’s been over two years since Jimmie passed however, his can do spirit is still alive in the hearts of everybody involved with Can Do MS, which includes our office staff, Programs Consultants, board members, program participants, fundraisers, sponsors and all our supporters.
“FOCUS ON WHAT YOU CAN DO.” -Jimmie Heuga
Jimmie Heuga grew up near Lake Tahoe, California and started skiing at the age of two. By 15, he was the youngest man ever named to the U.S. Ski Team. In 1964, Jimmie stunned the international skiing community when he took the bronze medal in slalom at the Winter Olympics in Innsbruck, Austria. Billy Kidd and Jimmie became the first American men to earn Olympic medals for Alpine skiing. Jimmie began noticing symptoms of what would later be diagnosed with MS in the spring of 1967, experiencing vision problems and numbness in his extremities. In 1970, he received an official diagnosis of MS. He was 26 and at the peak of his skiing career.
When Jimmie was diagnosed with MS, doctors advised him to avoid physical activity because exercise was believed to exacerbate his MS symptoms. Jimmie founded The Jimmie Heuga Center for Multiple Sclerosis, (now Can Do MS), in 1984 to challenge the conventional medical advice of the time, and share his program of physical activity, goal-setting and psychological motivation that improved his physical condition and outlook on life and MS.
Jimmie often said, “I’m not sitting here languishing, waiting for a cure. I am dedicated to maintaining my overall health because it helps me live the best life possible.”
Today the whole person philosophy and approach that Jimmie pioneered more than 27 years ago is acknowledged within the MS community as a standard of MS care.
In order to spread his philosophy he needed funding so he created The Snow Express for MS — the prelude to the Vertical Express for Can Do MS — in 1985, Olympian Jimmie Heuga and ten others set a world record, skiing one million vertical feet during 24 hours in Alyeska, Alaska. This event raised the seed money to start The Jimmie Heuga Center for Multiple Sclerosis.
Over the years, Snow Express (now known as Vertical Express for Can Do MS) broadened to include racers of all ages and abilities. It grew to be one of the premier on-snow fundraising events in North America. Thousands have participated in Vertical Express for Can Do MS races at 30 different ski areas, raising as much as $1 million per year for the nonprofit organization Jimmie founded.
“There’s more than a cure to your MS. What if we know the cause of MS? People with MS still need to maintain the quality of their lives. Each day is a new day. MS is a day-to-day issue. How do we take charge of our lives when so many challenges appear to be in the way? I wanted to start a program to address these issues.” -Jimmie Heuga (from 2009 interview)
The first lifestyle empowerment program that Heuga created in 1986 was based on his fitness and wellness approach. The CAN DO Program name exemplifies Jimmie’s can do attitude and spirit. Over the past 28 years, the CAN DO® Program has helped thousands of people with MS and their support partners see beyond their MS by giving them the knowledge, skills, tools and confidence to adopt healthy lifestyle behaviors, actively co-manage their disease and live their best lives.
We Thank You Jimmie
We are reminded of Jimmie’s courage to take a stand for people living with MS. He believed people are more than their MS. His example taught us that by focusing on what we can do and making healthy lifestyle choices, we can live passionately and love life.
What are you thankful for this November? Tell us on our Facebook page.
Our founder Jimmie Heuga was empowered to start his own organization in 1984. To do this he had to recruit a group of compassionate individuals with a medical, exercise and/or business background to help build Can Do MS into what it is today.
One of those compassionate individuals is Pat Kennedy, RN, CNP, MSCN. Pat has played an integral role in shaping the success of our programs over the past 24 years. This October at our 27th Annual Autumn Benefit, we are honored that she will be the 2012 Honoree and Can Do Award Recipient. This award celebrates the legacy of Jimmie Heuga by honoring an individual who demonstrates the can do spirit, making a significant contribution to improving the lives of those living with MS and their support partners.
Since 1987, Pat began working in MS care as a Nurse Practitioner at a MS Center in Denver. That same year she became a member of our Programs Staff. Over the years people frequently ask her why she chose to work in the MS field. Pat responds,
“I focus on the positives; there are so many things we can do for people living with MS.”
Over the years she became more involved with the planning and maturation of our flagship four-day CAN DO® Program. Initially designed as an exercise program, Pat joined others in helping to shape the program into our current whole person, whole health approach.
“Nurses are trained to analyze and interpret the whole patient. Because of this, I had a unique perspective to help create a CAN DO Program that focused on multiple aspects of the patient’s life.”
Pat has invested so much time to our organization over the years, so we had to ask her what it feels like looking back.
“I have watched how our programs have evolved and I am thrilled to see Can Do MS rise to its potential. It has really fulfilled me to see how many people we have reached over the years.”
Pat’s most recent accomplishment is the publishing of The Can Do Multiple Sclerosis Guide to Lifestyle Empowerment. As the editor, she worked with ten members of our programs staff to create a book that embodied the can do principles and philosophy.
“We wanted to create a book that expressed the ideas of Can Do MS. We don’t treat MS like your doctor does in a medical sense, we are educators.”
If you were to read reviews of this new book, you would find that many people agree with this. Even so much so that individuals with other chronic diseases or without an illness are finding the book to be very educational. They believe the information can help anyone.
Looking back, there were two main things that kept Pat involved in the organization, our founder Jimmie Heuga, and the opportunity to individually counsel program participants about how to live beyond their MS.
“Jimmie was an example of walkin’ the walk and talkin’ the talk. He would live his beliefs to the fullest; if he fell down he would get himself back up and find a new way to accomplish his goal.”
When you have a strong leader like Jimmie guiding your organization, he attracts amazing and talented individuals such as Pat who want to work in an environment with such inspiration and true passion for helping others achieve their goals.
“My proudest moments occur during the one on one counseling sessions with program participants. I get to help them look at an issue they’re having in a new way and open their eyes to an ‘a-ha’ moment where they realize they can accomplish things they never thought they could.”
Pat’s accomplishments go beyond her undivided attention to Can Do MS. In 2001, she was a finalist for the Nightingale Award in Colorado for outstanding nursing practice. In 2007, she was a recipient of the June Halper Award for Excellence in MS Nursing and most recently she was elected President of the International Organization of MS Nurses.
Whether it be speaking at MS conferences all over North America, commuting two hours to the Can Do MS offices in the snow or helping create innovative lifestyle empowerment programs for people with MS, Pat’s track record embodies the can do spirit and we thank her for that!
“I can help others discover they are more than their MS.”
From Managing Kitchens to Managing MS; Trevis L Gleason’s Life with Multiple Sclerosis
It wouldn’t be putting too fine a point on it to say that Trevis L Gleason’s culinary career had reached the stratosphere, both metaphorically and actually. While teaching at the Cornell University School of Hotel Administration, Chef Trevis was tapped by the US Agency for International Development (USAID) to develop a network of farmer-owned bakeries in the former Soviet Republic of Ukraine. Upon returning to the United States, he became Director of Operations for the California Culinary Academy.
By the time 2001 rolled around Gleason was jetting a quarter of a million miles annually for a German manufacturing company, training chefs and consulting to renowned restaurants and hotels. Then MS stuck a pin in the chef’s high-flying ways.
“Along with all of the physical difficulties MS brought into my life,” Gleason says, “I had fallen into the very American trap of defining myself by what I did.”
Without the career upon which he had pinned his persona, Chef Trevis was in danger of chaining MS to his life and he felt that weight taking him under.
“It was a long, hard battle,” he recounts, “but with the help of a crack medical team, an amazing rehab psychologist and supportive friends and family I found a new purpose in my life and a new focus.”
Like many people who know Can Do Multiple Sclerosis founder Jimmie Heuga’s story, Trevis found strength in the idea of understanding and accepting limitations not as a way of giving up, but rather as a way of managing the energies still available to him. Like running a six-restaurant hotel on a day that several employees call out sick, Trevis has learned to re-allocate his personal resources, prioritize his day and focus on getting done what can be done rather than what cannot.
Now an advocate for people living with MS and an award winning blogger on the topic of living with chronic illness, he has returned to his former passion for cooking and rediscovered his love for writing. Combining his passions, Chef Trevis put together a team of experts in nutrition, dietetics, shopping and cooking to create “The Caring Kitchen” video for people living with MS. The video will be released on Can Do Day (9/22/2012) at an event for newly diagnosed patients where Trevis is a featured speaker. The video will also be available online through his website on Saturday, September 22nd.
In addition to his passion for cooking, writing the Life With MS Blog for nearly seven years has reawakened his love of writing. His newly completed manuscript about the living part of living with MS is currently in publication talks.
While he won’t candy-coat the fact that MS has made his life much more difficult and challenging than it once was, Trevis chooses to focus on the can do spirit, rather than the cannot.
“Although I no longer cook professionally, I CAN use my professional expertise to help people with MS.” - Trevis L. Gleason
How will you celebrate Can Do Day? Tell us on our Facebook!
The success of Can Do MS is directly related to the wonderful volunteers who help make our programs and events a great experience. Our programs are possible because of people like Terry Owens-Alvarez, who is heavily involved with Can Do MS fundraising events like Vertical Express for Can Do MS. This winter series is our largest fundraising event and was created by our founder Jimmie Heuga 28 years ago in Alaska. For Terry, her involvement began in 1995, thanks to a friend.
“I had a friend living with MS who was involved with Can Do MS and she asked me to volunteer at the Squaw Valley Vertical Express event and take some pictures.”
After her first event, Terry was hooked.
“I immediately went from having one friend with MS to twelve. I really got to know them and instantly became inspired by their stories. After that there was no looking back and I have looked forward to the events every year.”
Terry’s involvement with Vertical Express for Can Do MS at Squaw Valley, CA has run the gamut. After starting out as a volunteer taking pictures she soon became more involved in organizing the Squaw Valley event along with fundraising pre-events. In 2000, Terry co-created the first Annual Winter Wine and Ski Expo in Reno, NV. This event typically hosts 600 people who have a deep passion for tasting fine wine and food, while shopping for the best ski gear! In addition to the Winter Wine and Ski Expo she has been organizing the Alpen Wine Fest which takes place in the fall at Squaw Valley for over 20 years. Wine lovers enjoy a variety of wines served in a souvenir crystal wine glass. Combined, Terry’s two events help raise over $35,000 for Can Do MS every year.
Many of Terry’s friends notice how much work she puts into planning and organizing these events and ask her “why?”
“Why do I spend so much time on something I don’t get paid for? Because I get paid with good times, great friends and the opportunity to befriend the people whose lives are changed because of the money these events raise.”
Terry’s can do spirit extends into other causes, but she places Vertical Express for Can Do MS at the top of her list. She feels a close-knit family connection that has been nurtured over the years with those who participate. Just like a child looking forward to the first day of summer camp, each year the Can Do MS supporters who attend do so because they get to re-connect with old friends, drink wine, ski and most importantly, raise money for people living with MS and their support partners!
It is truly a breath of fresh air to meet someone who voluntarily works so hard and cares more about the cause than the financial rewards. From pre-event planning to day-of implementation, Terry does it all.
“I do it because I love the family that the Squaw Valley Vertical Express for Can Do MS event has created and to make a difference in the lives of people with MS.”
Going to be in the Tahoe area on September 2nd? Buy your tickets to the 24th Annual Alpen Wine Fest now!
Imagine yourself at 28 years old...You’re a highly motivated and successful lawyer, living your dream working at one of the nation’s most prestigious blue chip law firms. You work ten, stress-filled hours a day and end up each night exhausted on your couch. You keep telling yourself that being this tired is from your stressful job. You are in great shape, running on a regular basis when one day you get shooting electric-like surges in your neck and down your spine. That coupled with the numbness in your limbs is enough for you to visit a doctor. In what seems like an instant, your life changes. The doctor explains that you have multiple sclerosis, an autoimmune disease that attacks your brain and spinal cord, which has no cure.
This was Karen Brisch’s life before Can Do Multiple Sclerosis.
“Getting diagnosed was extremely difficult. I was scared to go to sleep at night, because I didn’t know how my body would feel when I woke up the next morning. I would think, will I need a wheelchair to get around tomorrow? Ironically, I was worried about worrying. I was also scared to do much of anything, for fear that I might accidentally make the disease worse or provoke another symptom. Could I keep exercising? Stay up late? Work hard? Go to happy hour? I didn't know.”
After Karen’s diagnosis, she realized she had far more questions than answers. Being an active and driven woman, she was perplexed by advice such as “take it easy” and “go visit a museum.”
Karen was determined to get her life back. During the summer of 2011, Karen’s family discovered Can Do Multiple Sclerosis while vacationing in Vail, Colorado and immediately decided to research Can Do MS online.
“I googled Can Do MS and was surprised to read a description of a program that I had needed for such a long time.”
That next day Karen and her husband Mike walked into Can Do MS and applied for our May 2012 CAN DO® Program.
“The description of the program that really stuck with me was the idea that this program picked up where the doctors left off. I really hoped that the program would address all of the uncertainties that the doctors could not or would not address. I wanted a more comprehensive, life-style approach to managing my MS.”
While attending the program, Karen worked on her two biggest battles with MS - fatigue and cognitive issues. She learned that proper exercise and nutrition were key to reducing her fatigue and improving her stamina and cognition. Karen’s approach to exercise before the program was to give 150% for as long as she could, resulting in disabling fatigue and a long recovery time. Our programs consultants taught her that exercising just 20 minutes a day at a comfortable pace was all she needed. Not only did Karen receive individualized care from our programs consultants, she also got inspired.
“I think the relationships are magic. Having people you respect believe that you can do what you’ve set out to do is even more magical. It has really, really had a huge impact on my motivation and desire to achieve the goals that I set during the program.”
Karen’s new approach to managing her fatigue and cognitive issues has ignited her can do spirit. She wants to combine two of her passions to help pass on this spirit. She hopes to pair rescued foster dogs with former inmates reintegrating into society, for companionship, unconditional love and training.
“Without the CAN DO Program I would have never thought I could manage my fatigue enough to undertake a large task on my own. Once you’ve received a magical gift, though, you really do have to pass it on. There is nothing that I’d love more than having the energy to help others who really need someone to believe in them. I want to lift people up and give them the tools to overcome their life challenges, just like the CAN DO Program did for me.”
Meet Brian and Jen Talon from Connecticut, whose story is an amazing and inspirational example of a husband and wife supporting and inspiring each other through life’s challenges.
In 2010 Jen was diagnosed with MS. During her diagnosis she was in the middle of an extremely demanding 3 year dental hygiene program at a local college. She was one of 24 accepted into this prestigious program out of hundreds of applicants. When the director of the hygiene program found out Jen had been diagnosed with MS, she suggested that Jen withdraw from the program because of the physical limitations associated with MS. Jen’s response was short and to the point, “Absolutely not!”
Not only did Jen complete the program, she also became the recipient of the distinguished Dental Hygiene Award of Excellence; largely in part for her volunteer work with the community.
Life has changed considerably for the Talon family since the diagnosis. Jen once raced marathons and went on long hikes with her husband and two kids. Unfortunately, the days of running marathons are over-at least for now.
“With my MS it’s all about energy management, I need to determine what matters most and concentrate on those activities. For me that includes keeping up with our five and seven year old daughters and my work.” -Jen Talon
For Jen, MS has made her a stronger person as she has learned to cope and manage the disease instead of it managing her.
At first, the diagnosis was difficult for Brian to cope with. However, over time Brian saw how Jen managed the disease and was inspired by her positive can do attitude while meeting the challenges of everyday life.
Like his wife Jen, Brian is also a marathon runner. He has run over 20 marathons in the span of ten years. The next marathon he plans to run is a little different than your typical marathon. On June 23rd Brian will be running the Western States 100 Mile Endurance run in the Sierra Nevada Mountains of California.
“This 100 mile run through the mountains starts at the base of Squaw Valley Ski Resort and over the first four miles climbs 2,550 feet to an elevation of nearly 9,000 feet above sea level. Over the initial 20 miles, I will be running through miles of snow fields with temperatures potentially starting around 20 degrees. You then enter some deep canyons in Central California where the heat can climb into the 110 degree range. If you survive this, you are rewarded with running the trails for up to 10 hours overnight in darkness. The race itself is actually the reward for the thousands of training miles that will be logged leading into the event. “ -Brian Talon
In eight days Brian will come face to face with the “endurance marathon.”
“Seeing Jen take her diagnosis in stride and continue to live a full life really got me motivated to push my limits while raising money for an organization that has helped thousands of people manage their MS and take back control of their lives.”-Brian Talon
While preparing for the race, Brian and Jen have raised over $8,000 for our organization through their own fundraising efforts. Jen is inspired by everyone who is supporting Brian and Can Do MS’s mission. Today you’ll find Jen living the can do spirit by taking Sunday hikes with the family.
“Up next for her is to tackle a few mountains this summer while we vacation in Colorado.” -Brian Talon
As you can see the Talons are dedicated to one another. Each one inspires the other to accomplish things they never thought possible. Let this be a reminder to pass on your can do spirit with your loved ones.
Please help support Brian and Jen, donate today!
As we enter the 28th year of our flagship CAN DO Program, we are pleased to share highlights of our interview with Dr. Jon Feeney, who was an integral part in the creation and execution of the first CAN DO Program in 1984. A mutual friend introduced Dr. Feeney and Jimmie Heuga at the American Ski Classic in Vail, CO… and the rest is history.
“Jimmie told me about his story that he had MS and wanted to start a center about wellness with MS. I told him that I was a local physician interested in wellness and to give me a call whenever he needed my help.”
During the summer of ‘84, Dr. Feeney and Jimmie worked together to create a tailored exercise program. Since every case of MS is different, they emphasized that this exercise program must be modified to the fit specific needs of each participant. By integrating Dr. Feeney’s medical expertise with Jimmie’s perspective as an Olympic athlete, who was living with MS, they created the first CAN DO Program in September of 1984.
In its early stages, the CAN DO Program focused primarily on exercise. Over the years, however, exercise has become just one part of this multi-disciplinary program.
“What sets this program apart from any other MS program is its multi-disciplinary approach; we look at the whole person, including their physical health, emotional state, family, intellect, and spiritual beliefs. We wanted people to change their priorities. Instead of looking at what they could not do, we wanted them to focus on what they could do.”
Program participants receive one-on-one consultations with an array of medical professionals, which include: neurologists, psychologists, urologist, physical therapists, occupational therapists, and speech therapists, to name just a few. All of our medical experts agree that their expertise is just one element of a larger plan to empower people living with MS to lead fuller lives. By all accounts, it takes a unique person to become a Can Do MS Programs Consultant.
“They need to be uniquely skilled, dedicated to the participant, intellectual, and fun. Most importantly, they must be able to check their egos at the door.”
Although our Programs Consultants are a large part of what makes the CAN DO Program successful, the camaraderie among program participants is just as important. In the days leading up to the four-day program, participants go through a wave of anxiety. But this anxiety is put to ease when they realize that others living with MS are feeling a similar anxiety. When CAN DO Program alumni are asked about what helped them the most at our four-day program, we usually get the same answer – I am not alone. They believe that once you attend a CAN DO Program, you become part of a family that loves unconditionally and cares for one other. That sense of family is what helps program alumni stay motivated to keep a “can do attitude” year after year.
Just like a well engineered machine, when all aspects of the CAN DO Program are merged, participants often have a life changing experience in four days. As a close friend of Jimmie Heuga, Dr. Feeney understands Jimmie’s philosophy fully and carries that with him at every CAN DO Program.
“Jimmie had a unique perspective of what made him feel better and an amazing ability to pass on his positive can do attitude on to others participating in the program." Interested in learning more about our CAN DO Program? CLICK HERE
Reading the stories that inspired each square on the I AM. I CAN. I QUILT. Fundraiser, you can’t help but feel moved to think of your own Can Do Spirit and the power that comes from people uniting to create a work of art.
The woman behind the quilt, Michelle Keating, returned from the CAN DO Program in May 2007 with a desire to give back.
“I had a complete scholarship; I wanted to see as many people as possible have the opportunity to go to the program. It was a life changing experience for me, even after living with MS for 28 years.”
Quilts have a language of their own and can be incredible story tellers. Michelle describes the message of the quilt as one of hope.
“Hope for the people that complete the squares and can share their story, hope for the people that are inspired by the creativity and stories, and hope for those that can support the project and give back.”
The quilt is a collection of incredibly powerful experiences shared by individuals living with MS and the people that support them. Not only does the quilt tell a story, but it brings awareness to the power behind a Can Do Spirit.
In those years since her diagnosis, Michelle has overcome many obstacles that life has thrown her way, and she says that today she feels healthier than she’s ever been since the diagnosis. But it hasn’t always been like that. After her initial diagnosis, Michelle recalls feelings of fear, grief and anxiety.
“I was shocked, very shocked. Though there are challenges MS has brought into my life since that day, I prefer to focus on the blessings.”
Michelle had a good grasp of her life with MS long before attending the CAN DO Program. She knew that living a full life with MS was possible. She knew a lot about MS. She had a positive outlook. Even with all of this, the CAN DO Program was able to empower Michelle and give her new tools that allowed her to make a realistic, day-by-day plan to stick with it and achieve her goals.
“With a staff ratio of 2:1, I received unbelievable personal attention that is indeed rare in health care today. Since the program, I honestly believe that I’ve improved tremendously.”
Michelle’s quilt demonstrates journeys, just like her own, through life with MS and moving beyond the challenges of MS. The I AM. I CAN. I QUILT. is now completed and measures 63” x 63”. Tickets are on sale now! Click here for more information on the Can Do MS Quilt Raffle.
The drawing will be held November 10th, 2012 at our CAN DO Program Celebration Dinner in Vail, CO with all proceeds benefiting Can Do MS.
“I can live my Can Do Spirit everyday!”
Many people encounter a time when life as they know it falls to pieces. That happened to Tara Lane when she was 16 years old. As an award winning figure skater, competing was her life and greatest passion. At 16, that was all taken away from her by one 30 minute doctor appointment. Her intense training schedule had taken a toll on her body and resulted in several fractures on her legs and severe muscle damage. A two year recovery period began and skating became a distant memory.
“Everything I knew, identified with, and defined me as a person was instantly gone. Little did I know it was just a test for what my future was to bring.”
After realizing she would never return to the career she once had, Tara rediscovered purpose and passion as a figure and power skating coach. Then another doctor’s appointment changed her life. On March 2, 2000, she was diagnosed with Multiple Sclerosis – 3 weeks after her wedding. Scared and uncertain, two things went through her mind, “That my skating was going to be taken away from me for the 2nd time and I was going to have to get an annulment.” After the initial shock, she took a step back and realized she was going to have to adapt, yet again.
Following Tara’s diagnosis of MS, she tried to manage her health, career, and first year of marriage amidst a demanding schedule. Ultimately she failed at all three. So in April of 2001, she knew she was going to have to make some changes and decided to focus on what she was most passionate about – her health, skating and life with her husband. But as these things sometimes do, the focus faded and she slipped back into her hectic lifestyle and the pace put her in a ten week relapse.
“I was numb for the waist down as were both my hands.”
This was the perfect lesson for Tara to realize that she had to slow down and it didn’t come easy, but with tremendous support from family and friends, Tara’s life took on new meaning.
It was during this time that Tara and Matt decided to relocate to the Vail Valley to live a dream instead of talk about it. In an effort to meet people, she started volunteering at Can Do MS and the more she learned about Jimmie Heuga’s story and philosophy, the more she realized she could relate to him.
“After learning about the four day CAN DO Program and what it offered, I realized that I had not addressed the WHOLE me and there was more that I could do for myself and husband.”
Having just moved to Colorado Tara and Matt could not afford to pay to attend the program, so she applied for a scholarship and in May 2007 Matt and Tara attended the CAN DO Program in Vail.
“The CAN DO Program is an amazing and unique experience that everyone with MS should experience. Meeting with the specialists and attending the lectures just confirmed that the positive living strategies that I live by are working while giving me suggestions to further improve my life, overall health and live my best life possible. Most importantly, it helped me realize my true potential.”
After being diagnosed in high school, Carl has been living with MS for nearly 34 years. Carl chuckles and says, “I’m lucky – I got my chronic disease out of the way early and now everyone is catching up.” On his way to college with a basketball scholarship, Carl was told by doctors in 1980 that the way to live a long, healthy life with MS was to stop being active and stay cool. As in, never break a sweat - “That didn’t make a whole lot of sense to me,” he remembers.
Sports had been a big part of Carl’s life before and after his diagnosis. His sister, Catherine, who attended the CAN DO Program with Carl in 2010, said this was how they came to know about Can Do MS in the first place. A family friend roped them into the Squaw Valley - Vertical Express for Can Do MS fundraising event and it was a great way for the whole family to get involved through skiing. Carl had stopped exercising as often, but when he heard the lifestyle principles that Jimmie Heuga was promoting, he had to be involved.
“My family is super supportive and I have great friends. At one point we had 7 teams all raising money.” This included Catherine’s team, with sisters Lisa and Jennifer, fittingly dubbed “Chicks on Sticks.”
After fundraising for years, Carl finally decided to attend the CAN DO Program in 2010. “It was amazing,” Carl recalls. “It’s a place to share experiences. The medical staff are so intuitive and so dialed into what each person needs, can do and what their limitations are. They put a great program together for me that was really tailored to where I was in my life.”
Catherine also felt reinvigorated and increased her drive to raise money and participate, which led her to become a board member for Can Do MS.
Catherine emphasizes that, “Even after all of our years as a family dealing with MS, I didn’t realize the full complexity of MS. It has impacts beyond just physical problems – there are psychological and intellectual elements as well, and the program addresses all of those challenges. “
Carl adds, “What is really special about the program is that it recognizes and addresses support partners and gave them a forum to share and be heard. MS is an uninvited guest and it invades every element of life for people that have it thrust upon them, and it can be really hard.”
Carl’s sister describes him as an incredibly positive person and it’s infectious.
As I’m ending the interview with Carl on his can do story, he says something that sticks with me as we say our goodbyes, “I left Vail with a realization that my MS is only a part of my life, not my whole life.”
Six days after Kevin W. moved to Colorado to be closer to his father and mother, Kevin’s dad collapsed. He was rushed to the hospital and diagnosed with terminal cancer. Kevin dropped everything to care for his father. But despite his best efforts, Kevin’s father passed away six months after he moved to Colorado.
Neglecting his health care while caring for his family, he had ballooned to 355 pounds and was feeling constantly fatigued. He could not walk 100 feet and was debating a wheelchair. The combination of his weight, losing his father, and then a diagnosis of MS left him severely depressed.
Finding strength in a promise he made to his father that he would care for his ailing mother, Kevin began to exercise. The results were slow but obvious. He lost weight. His mobility returned, but living on a fixed income, and not able to work, Kevin felt his life lacked purpose. He wasn’t seeing any further progress in his health or outlook. “Emotionally, physically, I was a wreck.”
Kevin’s doctor at the time recommended the CAN DO Program. He had known Jimmie Heuga and was familiar with the life changing programs that Can Do MS offered to individuals with MS. Kevin didn’t think he could afford the program or even the travel costs associated with it, but his doctor was persistent and Kevin finally made the call to the organization. In 2010, he contacted Can Do MS and was offered a full scholarship to attend the program.
“I didn’t know what to expect. I was having some success; I was in remission, but I was winging it and I was at a standstill. Everyone made me feel really welcome. I had never met anyone with MS. Everything I did was by myself and then we all got to talk and share ideas – it made me realize that I had shut myself out. “
The world renowned medical professionals that make up the Can Do MS Program Staff strongly recommended volunteer work and gave Kevin the tools and motivation to take charge of his life and find purpose. “I was motivated to be proactive about my MS. I learned everything about my overall health from nutrition to physical training limits and even bladder problems. They showed me how much I could do without damage – the smart way of exercising. They give you access to so much information for every aspect of your life. I finally had peace of mind and direction to take in life.”
Since then, Kevin has helped connect a woman newly diagnosed with a neurologist who supports an active way of treating MS. He raises awareness by giving interviews and speeches to newspapers and local groups. He even has helped someone as far away as Australia with advice and encouragement.
“The one take away that I really got was direction. Something clicked from Day 1. It gave me a purpose for my entire life – helping people, being an advocate. I think it is part of what I was meant to do. I was just spinning my wheels; I was getting by, frustrated psychologically and bent out of shape. They focused on the whole me, spiritually, psychologically and physically.”
“I’m not able to do huge things, but what I learned is that I can still do small things that matter.”