Individuals Inculcating Inspiration

By Scott Cremeans

Someone recently told me that I was an inspiration to them, but I do not feel like an inspiration. This person explained to me that I have a great attitude. They shared that I have an excellent positive disposition despite the numerous adversities that were placed in my path. They do not realize that my life is not pansies and puppies especially when dealing with my MS. These compliments make me think that the definition of inspiration might be nebulous. The following stories tell the tales of those who are inspirational individuals to me. Continue reading

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Stories to Inspire

Find Out What “Moves” Joe Revello

Joe Revello tests out his new Alinker, with its inventor Barbara Alink

Joe Revello tests out his new Alinker, with its inventor Barbara Alink

“It’s all about helping people,” noted MSAA volunteer Joe Revello of Plainfield, NJ. “Whether it’s raising funds, helping at an event or just having that conversation to build awareness, any effort in the fight against MS is critically important.”

Joe, who was diagnosed with MS in 1995, has been an active volunteer in the MS community for more than a decade. Recently, with the help of his sister-in-law, Joe organized a very successful school walk for MSAA and has now joined our newly formed volunteer task force aimed at expanding local, grass-roots fundraising efforts to support our signature programs and services.

But beyond his fundraising successes, Joe’s commitment to helping people with MS continues to grow as he now embarks on a much different and very personal crusade. In fact, you can say it literally “moves” him toward a new level of advocacy.

“Walking has been my biggest challenge over the years,” said Joe. “I can’t walk unassisted, my balance is horrible, and I experience pain in my hands and wrists when using crutches. Using a walker has me bent over, tightens my back and doesn’t allow me to walk as far as I want to. I also tried using a scooter but it wasn’t for me as I wasn’t moving and I didn’t want my physical condition to decline.”

Never shying away from a challenge, Joe knew there had to be a better option to help meet his mobility needs, so he turned to … the Internet – of course! “Believe it or not I typed in the words: ‘Futuristic Walking Devices’ and up came this product called the Alinker. I was immediately impressed by its design and function. The more I read about it, the more I knew this could be something that could change my life.”

Produced in the Netherlands, the Alinker is described as a walking-bike that allows users to sit upright so they are eye-level with their environment. Although excited by his discovery, Joe’s enthusiasm was soon tempered when he spoke to the inventor, Barbara Alink, and learned the product was not yet in production and only available as a prototype. However, Joe and his wife Denise didn’t want this possible opportunity to pass them by and ventured off to the Netherlands to meet Barbara and test out the prototype.

“I was on the Alinker that day for four hours and walked two miles,” noted Joe. “I was not fatigued. I moved at my own pace, independently and could stay connected with my companion. I could have never done that with a walker or crutches.”

Unfortunately, Joe and his wife had to leave the Netherlands without the Alinker. A short time later, Joe obtained his own prototype to use temporarily until the company, Alinker Inventions, could begin the manufacturing process. Through a grass-roots crowdfunding campaign in the Netherlands, the company was able to produce a limited number of Alinkers and Joe became the first United States citizen to own a finished walking bike, at a cost of $2,000 US. When hearing about the company’s plans to establish a similar fundraising campaign to help bring this mobility device to people in the United States, Joe immediately put on his MS advocacy hat and went to work.

“My goal is to make the entire MS community aware of this product,” said Joe. “Obviously everyone’s MS is different and people have their own, unique mobility needs. But I would like to see people who are mobility challenged like me have the same life changing experience as I have had with the use of the Alinker.”

“After training, I can walk using both legs more symmetrically on the Alinker and I have built up muscle where I hadn’t before when using other mobility devices. Plus people now call me the cool guy on the yellow bike!”

Editor’s Note: Please know MSAA does not recommend or endorse any particular product or service. This article is intended for general informational purposes only, and it does not constitute medical advice. For diagnosis and treatment options, you are urged to consult your physician.

 To learn more about this product, please visit http://www.thealinker.com/.

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Stories to Inspire

11-Year-Old Walker Reynolds Swims for His Mom and Others with MS

Shana Walker

Shana Stern and Walker Reynolds

“I have a child who has had to see his mother in pain, stuck in bed, on medications – because of my MS,” explains Shana Stern of Austin, Texas. “And because of this, my child is incredibly empathetic and compassionate.”

Shana, who was diagnosed with MS in 1999 and recently featured in MSAA’s Art Showcase, is proudly referring to her 11-year-old son Walker Reynolds who embarked on a remarkable and inspiring quest this summer. Walker is using his love of swimming to help raise money to improve the lives of those living with multiple sclerosis (MS).

By participating in MSAA’s Swim for MS fundraiser, Walker has set an ambitious goal of swimming one minute for every dollar donated this summer up to $1,600. Plus, at the end of the summer on his 12th birthday, he will do a cannonball for every dollar donated over his goal.

Serving as MSAA’s national signature fundraiser, Swim for MS encourages participants to set a swimming-related challenge, such as swimming laps over a set time or distance while recruiting friends and family to donate to MSAA in support of their goals. Swim for MS is any pool, any time – how volunteers choose to participate is completely up to them.

“I think Swim for MS is a cool way for kids to be world participants – and actually begin    to make a difference in the world and to the lives of many people,” Walker says of the fundraiser. “When I saw that for $600 I raise, a person with MS who can’t afford a wheelchair could be given one. That really motivated me.”

In addition to swimming, Walker loves art, like his mother, and enjoyed seeing her painting in MSAA’s Art Showcase. “When my mon’s vision got to too bad for her to keep writing, she began to paint. And because she kept dropping brushes, she created her own method of painting, using only her fingers. People in Austin really liked what she does and started buying her pieces. Her painting and art is what keeps her going on bad    days because she can just lose herself in the paints and colors. It was great to see it on your website!”

While Walker continues to hit the water and swim his daily laps, Shana has been actively promoting his amazing Swim for MS challenge to family, friends, and the general   community through emails and social media posts. As one could imagine, Shana’s admiration for her son is immeasurable.

“I am so extremely proud of Walker for trying to do something to help others in the world, especially at his age.  I’m grateful to him for constantly being my inspiration to fight through whatever difficulties I face that day. He gives me reason to keep living.”

MSAA certainly echoes these wonderful and well deserving praises of Walker and his dedication and compassion to help others in need. We greatly appreciate his efforts and encourage anyone interested in helping Walker meet or exceed his goal to please visit his Swim page at: http://support.mymsaa.org/goto/WalkerReynolds .

Stories to Inspire is a regular feature in My MSAA Today, our bi-monthly eNewsletter. Sign up to receive email updates from MSAA to have the newsletter delivered right to your inbox!

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Stories to Inspire: MS Client Swims for MS and More

By Peter Damiri

“I actually hugged my doctor when I found out I had MS,” explained Simone Sanders, 29, of Seaside, California. “After having so many symptoms for so long, I was relieved they found out what was wrong with me and that something could be done to help. But then, I was also frustrated that I had a chronic illness that had no cure.”

Simone struggled with a myriad of unexplained medical issues since her early 20s. Following the onset of several severe exacerbations, she underwent MRI testing and received the official diagnosis of multiple sclerosis.

“I lost my vision, couldn’t walk, and lost my job,” recalled Simone. “I couldn’t drive or go anywhere, wasn’t active, and became very depressed. But I found support from MSAA as well as talking with others who have MS. They pulled me out of my depression and helped me realize that I can accept my diagnosis of MS but do not have to be crippled by it.”

Now married to an Airman First Class in the United States Airforce and looking to start a family, Simone has since regained the majority of her vision and ability to walk, but still struggles with daily fatigue and a variety of periodic MS symptoms. However, rather than focusing on the negative, Simone maintains a powerful fighting spirit as she strives to improve her physical and emotional wellbeing through diet, exercise and a deep, personal commitment to help others with MS.

“I try to be as active as I can, running 5K charity races with my cooling vest from MSAA – which has been a lifesaver. I’m always looking for new ways to help the MS community and was happy to find Swim for MS,” said Simone.

“I had a passion for swimming ever since I was eight-years-old and was really good at it. After my diagnosis, it made sense to go back to swimming and exercising in the water, especially when I had access to a pool. Then when I heard about Swim for MS I said, this really fits with my interests and passion and it’s for a good cause for people like me.”

With the goals of swimming 1,000 laps in three months and raising $1,000 for MSAA, Simone began her Swim for MS challenge in late March. She bases her ambitious goal on her average swim of 10 laps per day, but also recognizes this can fluctuate due to her struggles with fatigue and other MS factors.

“Some days are really bad days and even some weeks are bad, but when I’m in the pool I know that I can push myself to do my best,” said Simone. “The coolness of the water helps keep me from being overheated and I can float to rest when needed.”

Recognizing the benefits she receives from her cool suit, Simone would like to dedicate donations from her Swim for MS fundraiser to help support MSAA’s Cooling Program as well as other vital services. She recently enlisted the support of her mother to help recruit donations from family members and plans to promote her Swim challenge to her new military family as well.

“Even though my goal is to swim 1,000 laps, I feel accomplished no matter how many I finish because in spite of everything I’ve been through, I’m still able to swim,” Simone said. “I tell myself every day to have courage and have faith. Have the courage to get up in the morning and have the faith to get through the day, and do the best you can.”

MSAA would like to thank Simone for granting us this interview, choosing to support the MS community through Swim for MS, and inspiring all of us to stay positive and keep fighting every day. To visit Simone’s webpage and support her Swim for MS challenge, please visit: http://support.mymsaa.org/goto/simoneswim. For more information on aquatic exercise and MS or how to start your own Swim for MS fundraiser, please access www.SwimForMS.org.

Simone Sanders - Copy

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