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When Vicki Wilson was diagnosed with primary progressive multiple sclerosis in May 2012, she was devastated.
PPMS effects only 10 percent of people with MS, and she was not sure what to expect.
"The patient never has relapses," Wilson says. "The disease just continually progresses and will leave them wheelchair and/or bedridden. It typically starts with weakness in the legs, making walking difficult. I had always been very athletic and active. This was very difficult to hear."
Wilson, who lives in Little Rock, Ark., says her husband and family are her biggest supporters. Her parents even flew halfway around the world to accompany her on a trip to receive treatment.
Wilson remains active because she refuses to let the disease stop her from doing physical activities.
"I lift weights, walk, ride my bike and kayak," says Wilson, 48. "I think being physically active is so important for everyone with MS. It really does help."
Although treatment options are limited for PPMS, Wilson thought there had to be something out there -- just maybe not in the U.S. She had to give up on her career (she worked in educational furniture sales specialist in north Florida) and focus instead on digging up treatment options on the Internet. There she found a Facebook forum about a treatment that uses the patient's own stem cells to reboot their immune system.
Wilson applied to hospitals around the world for entry into their treatment programs, and a Moscow hospital accepted her.
"They gave me a 60 to 70 percent chance of stopping the progression, but little hope of regaining what I'd lost," Wilson says.
After falling repeatedly, Wilson decided it was time to try the treatment. A bowling fundraiser was held for her to help her go to Russia and pay for the specialized treatment. She checked into the hospital in Moscow on August 19, 2013, and spent more than a month there.
"I've spent the last year trying to regain some of what I've lost," she says. "After six months I no longer needed my trekking pole, except for long walks. Before the treatment I could barely walk a quarter-mile. I can now walk two miles once a week and walk 1.5 miles several days a week."
Not only did the treatment stop Wilson's progression, but she is slowly getting stronger.
"I've started riding my bike again, and it feels great," Wilson says. "I feel I will be able to ride 10 miles before the end of the year. I'm at seven currently. I have so many people cheering me on.
"I know with continued hard work, I can maintain or even continue to improve over the next year. Staying physically active has truly been the key."
When Amy Penszynski began having a vision problem in 2008, it turned out to be something called optic neuritis in her right eye. It's a swelling of the optic nerve, which is sometimes linked to multiple sclerosis. Her ophthalmologist had Penszynski follow up with an MRI.
"The MRI showed lesions on the brain, which are shown in MS," Penszynski says. "Some more cognitive tests and a spinal tap confirmed a mild case of MS."
The hardest part for Penszynski was the waiting. The Glassboro, N.J., woman says the tests were excruciating mentally and emotionally. The news of her MS diagnosis even caused her to slip into depression for a while.
"My first scary thought was, 'Oh my God, am I going to end up in a wheelchair? Am I going to be paralyzed?'" Penszynski says.
Penszynski, 38, spent many weeks in bed trying to get through symptoms. She had difficulty walking due to numbness in her feet and legs, causing her to have poor balance as well. The support of Penszynski's family, friends and fiancé Seth, motivated her to push forward.
"I had so much fear and anxiety. Fear of the unknown, what was to come," she says. "I did a lot of praying and got myself a good neurologist, and got on medication. Slowly my symptoms subsided, which definitely helped my mood, and I started to move around more ... and think more positively.
Penszynski, a massage therapist and Reiki practitioner, started becoming proactive. She changed everything about her eating habits and ate predominantly healthy food. She says her theory is that food can be poison for our bodies or it can be medicine. She tries to incorporate a lot of anti-inflammatory foods into her diet and is a user of and an advocate for Shakeology, an all-natural meal replacement shake, for almost three years now. Penszynski recommends the shakes to anyone, even if they don't have MS.
"I feed my body right and I also make sure I exercise in some way, shape, or form every single day, whether it’s stretching, yoga, a walk with my dog, a run, my Beachbody workouts at home, hiking, swimming ... whatever I feel that day," she says. "I like variety, but 99 percent of the time you will find me doing a Beachbody workout in my workout room or living room. Those workouts, mainly P90X with Tony Horton (my favorite trainer!), helped to change my life drastically in so many ways."
Penszynski started her health journey in 2005 at 235 pounds standing at 5-foot-3. She has almost reached her 100-pound goal at 139 pounds. Penszynski's decision to get healthy came before her MS diagnosis, but combating that disease has further motivated her fitness efforts.
"I used to hate running and working out until I tried it and became hooked on the feeling afterwards; the adrenaline, the good mood after, the sense of accomplishment, knowing I did it, the results that kept coming. I hit some snags along the way. I am human after all ... but I found my inner athlete, and even though I’ve backtracked a few times or had some health issues, I always manage to get back up and get going again somehow, because I know how I feel when I AM on track, when I AM taking care of my body."
Penszynski says she has realized that her new approach to health is not a race to the finish line, not a diet, not a fad -- it’s an entirely new lifestyle.
"We get one body, and I try my best to take care of that body. I think about my own health, how lucky I am overall, that I am grateful that I CAN move around, so I will not let myself complain (too much) about exercising. I keep my mind in the right place. I remind myself of how I feel when I am done. Those thoughts keep me going, keep me motivated," says Penszynski.
Penszynski also runs fitness challenges on Facebook and posts about her journey on my personal Facebook page and fitness/health page on Facebook, REVolution Fitness and Health. Penszynski knows she is not alone and nobody has to do go through MS alone. She wants to share her journey in the hopes she will inspire someone -- that someone will look at her one day and say they never quit, never gave up, because of her.
"That is the best gift in the world," Penszynski says. "If I can influence one person to get healthier, get moving, take care of their health, live their lives to the fullest, that is worth more than anything. I want to inspire and help as many people as I can to help them realize they can and will do what they set their minds to. Anything is possible."
The main reason Penszynski became a coach for Beachbody was to support and help others along on their journey. She wants to pay forward what has worked for her in her health journey. Even if she changes one life as a coach, she knows she will have succeeded.
"Support is key. Motivation from positive people is key. Knowing you have help is key," Penszynski says. "That is what keeps me going every single day. Hope. Helping someone through their journey, being an encourager, a mentor. Being a part of something so big and so positive keeps ME positive," says Penszynski.
Penszynski says she has met so many amazing fighters on MS pages on Facebook, and at live events like MS walks, fundraisers, etc. She plans on starting up a support group/MS fit club and a fit club for all in the near future as well, to keep people supported, hopeful, and living healthier, happier lifestyles. She also would love to do a fundraiser/half marathon for MS at some point.
"Exercise, good nutrition, support, attitude, determination, and keeping your 'why' in front of you at all times will get you where you want to go," she says. "Take care of your body and it will take better care of you! What you put in, you get out! Never, ever give up. We are all worth it."
When Portia O'Callaghan was diagnosed with multiple sclerosis on Super Bowl Sunday in 2004, she did not let that stop her from running.
"I have been a runner on and off my whole life, but mostly for fitness, not competitively," O'Callaghan says. "When I was diagnosed, I thought it was important to run while I still could, so I got more interested in it. I also thought it would keep me healthy, and I think it has. Since I've been diagnosed, I've run two marathons, five half-marathons, and countless shorter races. This year I'm running a 5K every month and hoping to PR (set a personal record) this fall."
Such a scenario might have seemed ridiculous when O'Callaghan, 39, began suffering from MS symptoms.
"My leg felt weak and I had never experienced anything like it before," she says. "I thought I had a virus or something so I went to the ER. The doctor told me I either had MS or meningitis. I asked, 'Which of those do I want to have?' The doctor said meningitis, but it turned out I had MS. He cried when he told me this, and I was really scared. When a doctor cries, you know it's bad."
It turns out that many people can have symptoms for years before they are diagnosed with MS. After her diagnosis, O'Callaghan was motivated to keep running because of her family. She says it is important to make healthy decisions because with each one she has the chance to live a normal life. She wants to stay healthy for her husband and their 9-year-old daughter.
"My husband is an ultrarunner and he inspires me every day," O'Callaghan says. "He gets up early, works eight hours at a bakery, then goes for crazy long runs in the afternoon. I have a wonderful, supportive running family in the Oiselle team, which is a Seattle-based women's running apparel company that has a team of 250 athletes -- mostly regular women like me, and some elite runners as well."
When O'Callaghan, who works as a user-experience designer, is not running, she enjoys her time with family and hiking. She tries to do core and strength exercises a few times a week. While O'Callaghan has been lucky that her MS symptoms haven't been more severe, she has experienced minor issues in balance, speech and fatigue.
"I became very motivated to eat healthier after having more fatigue in the past six months," she says. "I am mostly vegan and stay away from dairy, caffeine, sugar, and processed food. It sounded like a boring way to eat at first, but I feel great and already have less fatigue in the few months I've been eating this way. I also meditate every day for 10-30 minutes, which I think is great for calming the nervous system."
O' Callaghan writes about running with MS in a blog called Run Portia Run. She also recommends reading Overcoming Multiple Sclerosis: An Evidence-Based Guide to Recovery to anyone who is newly diagnosed with MS.
Mark Van Meter was 21 when he received the diagnosis of multiple sclerosis. Doctors told Van Meter that he could not exercise and that he had to stay out of the heat. That is a hard order to follow in Arizona.
"It was a pretty hard shock that from being super active to hearing a doctor say don't exercise, stay out of the heat," Van Meter said. "I mean, I am in Phoenix, Arizona. What does that mean?"
Van Meter, now a 51-year-old web developer for Wells Fargo, refused to sit around and wait to get better. He decided to exercise and go into the heat against his doctor's wishes and prove him wrong.
"Exercise at that point was walking from one side of the room to the other or going outside and walking 10 feet, touching each of my fingers with my thumb," Van Meter said. "For me, if I could see any improvement, that was a win."
It took Van Meter six months to recover from his first relapse. That's when Van Meter knew he could no longer wrestle or play baseball. Armed with a positive mindset and a determination to stay active, he made the switch to running.
Van Meter worked from walking 5k races all the way up to Ironman competitions, despite numerous relapses. Van Meter has persevered through all the relapses and a car accident during a triathlon with the hopes of qualifying for the ultimate Ironman competition: The Ironman World Championship in Kailua-Kona, Hawaii.
The Ironman World Championship is structured like every other Ironman event with a 2.4 mile swim, 112 mile bike ride and a 26.2 mile run. The biggest difference is that these events take place throughout the treacherous terrains of Hawaii.
Three years ago, Van Meter started a support group called Active with MS. The focus of the group is for individuals with relapsing MS who want to stay active. Van Meter has also participated in the last four Bike for MS events.
Van Meter acknowledged that coping with MS would be a lot more difficult without having the love and support of his wife, Mariana.
"I have always been confident that my wife will be there," Van Meter said. "It's great to have a spouse that no matter what happens to you, they are going to be there."
Garth McLean was an actor in Los Angeles when he was diagnosed with Multiple Sclerosis. A doctor suggested trying yoga as a way to cope with the symptoms. McLean saw the benefits and became such a devoted practitioner of yoga that he decided to become an instructor. Here's his story of how it all unfolded:
When Harriet Black heard a neurologist say she had multiple sclerosis, she was determined to make sure she would move with wheels attached to a bicycle instead of a wheelchair.
"For me it felt like the floor was coming out from under me," Black said. "I wondered how many steps do I have left in me?"
That was 17 years ago. Black is still moving, both on her feet and on her bike. Black, now a 63-year-old who owns a manufacturing business with her husband, knew she had to change her diet, exercise routine and even her attitude to effectively fight MS.
"It turned out for me a blessing in disguise," Black said of the MS diagnosis, "because at age 47, I wasn't in as good of shape as I am right now."
After the MS diagnosis, Black said she eliminated as much saturated fat from her diet as possible. She also started taking nutritional supplements that help eliminates heavy metals from the body.
The supplements and change in attitude were courtesy of Dr. Michael Schachter in Suffern, New York. Dr. Schachter’s practice focuses on naturally cleansing the body of the toxins that can exacerbate diseases like MS. Dr. Schachter advised Black to have her amalgam dental work removed. Black said she was also exposed to a few viewpoints on life that changed the way she saw the world.
While diet and supplements helped Black, she knew she also had to reshape her exercise habits. An avid biker, Black and her husband, Bob, just completed the 2014 New York City Triathlon as part of the Race to Stop MS triathlon team. The 2014 event was also a personal best for Black, as she swam, biked and ran her way to a combined time of 3 hours and 52 minutes.
Black has raised more than $4,500 for the event. The 2014 triathlon was Black’s fifth triathlon; a feat that could not have been accomplished without a stroke of luck in registering for her first triathlon in 2010.
"When you wanted to register for the Tri, you go online and keep entering your name until you get in," Black said. "I get on and Bob is still trying to get on. I fill out my form and five minutes later it says ‘Sorry, all filled up.’ Bob never got in."
Black has also dedicated her personal time to helping people newly diagnosed with MS. She has talked to dozens of individuals at length about their fears, while giving them a glimpse into her life and her way of thinking. Black is working on creating a website where she can tell her experiences with MS, while helping those newly diagnosed cope with the initial shock and fear that comes with MS.
"It doesn’t have to be scary," Black said. "We can become fearless, and we can do good work."
The only thing that could have stopped 47-year-old Jeffrey Zaniker from completing the Race Across America bike event was a herd of cows in Utah.
"We got stuck behind a couple of farmers on horseback driving cows," Zaniker said. "There were about 200-300 cows and four riders on horseback, and the road was tied up on both sides."
Zaniker, an Accenture executive in Indianapolis, managed to work through the livestock logjam and finished the 3,000-mile trips that began June 14 in Oceanside, California, and ended six days later in Annapolis, Maryland.
The Race Across America is one of the National Multiple Sclerosis Society's projects to raise money and awareness. Zaniker was diagnosed with MS in 2002, and his Zaniker's father, Don, had passed away from an aggressive form of MS in 1987.
"It was such a rapid deterioration from being perfectly healthy, working, supporting a family to being completely disabled and in a wheelchair," Zaniker said about his father.
Zaniker, like his father, was a salesman at the time of their diagnosis. While in a sales role for Accenture, Zaniker had to travel four to five days a week, including a couple of stints throughout Europe. The stress of travel and working took a toll on Zaniker's health.
"I think the thing that was most difficult was taking care of myself," Zaniker said. "It was tough to keep up any kind of physical regime and take care of myself. That is where it got to the point where enough is enough."
When Zaniker told Accenture of his condition, he was transferred to the managing director role, which called for significantly reduced travel and less hours. Since the transition, Zaniker has lost 40 pounds and is less stressed.
Zaniker and a friend, who also has MS, came up with the idea to create a bike team to compete in the Race Across America, an event that was launched in 1982. Zaniker was part of an eight-rider team, called Gears to a Cure, that has raised about $90,000 since April. Of the 23 members involved with the team, nobody is closer to Zaniker than brother John.
"He was one of the strongest supporters," Zaniker said of his brother.
Jeff and John Zaniker rode the second shift together. They were on the bikes for 10 minutes, then off for 10 minutes for two hours stretches. The Gears to a Cure team biked the 3,000 course in six days. When Zaniker crossed the finishline, he was greeted by his wife and three children.
"You are going to have to figure out how to cope with it," Zaniker said. "Your family goes on the journey with you and deal with the fact that slowly, little by little, your health is going to deteriorate to varying degrees. I think it would be very difficult to deal with this disease if you didn't have that support network."
Matt Bullard loves cycling, but after a diagnosis of Multiple Sclerosis, he wasn't sure if he could continue his passion. His doctor told him that it would be beneficial to stay active, so Matt kept pumping the pedals on his bike. He has even upgraded to tackling a triathlon and continues to help an MS charity in the process. Here is his story:
Mallak Anani is a senior at the University of Michigan with hopes of one day working in politics or government. She spent the past semester interning in Washington, D.C., on a school-sponsored program.
A Michigan native, Anani was also a three-sport athlete in high school, starring in volleyball, basketball and track. She played libero for the volleyball team and drew interest from Division II schools, but had her heart on becoming a Wolverine.
"I do wish I had the opportunity to play volleyball at the college level, but playing for a D-1 school meant I needed to fit certain criteria and I, unfortunately, am not nearly as tall as most girls are on Division I volleyball teams," Anani said. "My coaches were connecting with Division II colleges, but I told them I wasn't interested because I was set on going to Michigan and wouldn't have traded that education for an athletic scholarship."
During her sophomore year at Michigan, Anani discovered that she has Multiple Sclerosis. She was just 18 at the time, and the early months after the diagnosis were grueling.
"I was taking a medication that my body rejected for the eight months that I was on it, leaving me sick for two to three days per week,” she said. “I had fevers of 103 degrees, nausea -- I was unable to move out of bed and felt hopeless. After my doctor realized my body was rejecting the medication, she switched meds, and now things are much better.”
Anani still experiences symptoms of numbness and pains in her head, plus blurred vision, dizziness and fatigue, among other unpredictable maladies.
But she has stayed active in her pursuit of studies and career path, in addition to carrying on the athletic commitment that drove her in high school.
Anani played varsity for multiple years on all three of her teams, winning MVP of the volleyball squad and earning a nomination in her hometown, Dearborn, as female athlete of the year. Her basketball coach also deemed her the team's best defensive player, and she won an all-city award in track.
Though the team element of her athletic experience has transitioned to more individual exercise -- and she had to give up the promising opportunity to play college volleyball -- Anani keeps up with her hoops and running.
"I play a lot of basketball at the gym and work out on cardio machines like the elliptical and stair master, use weight training machines and do bodyweight exercises,” she said.
Anani was also able, for the previous month, to observe the Muslim holy month of Ramadan, which requires fasting for most of the day.
After the initial complications that accompanied her MS diagnosis, Anani considers her daily routine mostly normal again. She expressed particular gratitude to her father and older sister (one of many siblings) for guiding her through the valleys of a sometimes debilitating ailment.
If you're a pickup player at Michigan, watch out for Anani on the hardwood next year. Almost two years post-diagnosis, she's still taking both the girls and boys to school.