Category Archives: Others’ MS Stories

Cathy is a Tysabri Patient Advocate

This is the last interview for New Mobility’s “MS Life” column. I became its columnist this past January, as it began to be published every other month. A new column for non spinal cord injuries will be coming, which will also include MS profiles and information. I’m looking forward to contributing to this new feature. For a look at the last column in its entirety, visit New Mobility’s website . I had the good fortune of profiling Cathy, from Navigating the Journey of MS, who proved to be a genuine example of MS strength:

When diagnosed with multiple sclerosis in 2004, Cathy, 46, soon found herself in a difficult position: she was failing to see results from two of the disease-modifying medications. Her condition rapidly worsened until she began Tysabri, the once-monthly infusion. With much success, Cathy was able to increase her strength and make great strides within six months of the Tysabri treatment. This sparked the interest of Biogen—Tysabri’s creators— who asked Cathy to become a patient advocate and share her MS story. “I make motivational speeches at Tysabri functions across the state of Wisconsin, where I now live,” she says.

Having a former career in sales, Cathy was also prompted to start her own online MS store, The MS Shoppe. With the help of a marketing company and an attorney, she and her husband now sell MS-related assistive devices, clothing, and novelty items. “I hired a company to teach me and I have 90% control (over the company) except when I get stuck and they jump in and help me,” Cathy says.

Cathy identifies the source for her continual inspiration: her husband. She confesses that he has always been there for her during their 21-year marriage and now so more than ever. Cathy says, “My husband inspires me. He is the only person who has completely been there for me in my life. He has been my rock and has kept me grounded and motivated.”

Visit Cathy’s MS store at www.themsshoppe.com.

Adjusting to Change: Diane J Standiford

I recently had the pleasure of interviewing Diane J Standiford for part of New Mobility magazine’s MS Life column. The page is essentially for those with moderate to progressive MS, who are encountering new paths of mobility. I quickly thought of Diane and wanted to interview her, since she has a great deal of multiple sclerosis experience and she also has a GREAT attitude. She’s hilarious, straight-to-the-point, and yet serious and full of compassion. The following is the unedited version of the profile, which was published in the June issue. The piece is a quick shot: roughly 225 words. It doesn’t always do the candidate justice, and so there is consideration for doing a feature article about Diane’s assisted living experience next year:

Diane J Standiford was diagnosed with multiple sclerosis in 1990, and she was able to remain in the outside workforce nearly 14 years following that day. Working for the city of Seattle, she had her first serious relapse during her first week on the job. Although frustrating, she persevered and continued to live in an independent apartment with her partner. Says Diane: “My first serious symptoms started my first week at my new job. I was out in the workforce for 18 years until retirement, full-time, with lots of overtime. At one point I telecommuted several days a week.” Diane retired from her job in 2004.

On the home front, Diane and her partner of nearly 3o years have contended with a life of challenges together. Both have been using power chairs for some time; Diane for her MS and her partner for several progressive, chronic conditions of her own. “I’ve been her caregiver, then she mine, and we’ve usually taken turns, by fate and not by choice,” says Diane.

A bend in the road came this past year, when Diane and her partner found themselves needing to move to an assisted living facility: a once manageable life had become increasingly difficult. Settling in, Diane has now found camaraderie with her neighbors and finds herself reading, playing pool, and participating in group activities. Her response to the move: “Keep your sense of humor and consider the move an adventure.”

Diane has a multiple sclerosis blog, A Stellar Life, where she records her personal journey and comments on news items of the day. She is currently working on WALKING, which is absolutely amazing and a testament that a great deal is possible, if a person sets her mind to it.

Barbara Brave is an Active MS Patient

Barbara Brave, whom I had the honor of interviewing for the February 2009 issue of New Mobility, has been living with multiple sclerosis for the past 14 years. Previously residing in Roanoke, Virginia, she moved back to New Jersey about eight years ago to be close to family members after experiencing an acute attack that required extensive rehabilitation.

Barbara now resides at the Bergen Regional Medical Center in Paramus and she relishes her close-knit family as well as the new friends she’s made there. “I like to tell other residents that I’m ‘moving with motivation’ or I’m ‘exhilaratingly energetic’ to brighten their days,” she says.

Barbara also stays active with the National MS Society’s NJ Metro Chapter by putting together and sending their mailings at their local office. The chapter makes a big effort to employ medical center residents in volunteer positions, and transports them to and from functions. Recently Barbara participated in a Metro Chapter fashion show, part of an annual fundraiser that is known as the Women on the Move Luncheon. She was the only model to display her fashions from her wheelchair. “It was a grand and glorious day,” says Barbara. “I modeled one outfit and jewelry and I went slowly around the perimeter of the runway.”

Barbara reveals her sources of motivation to keep active and enthusiastic: “I have a wonderful family and a group of friends I can rely upon.”

Musician Victoria Williams Has Multiple Sclerosis


I have a quirky, folksy music CD that I bought back in the early 1990′s. That was a time when “alternative” music— part of the independent, non-pop genre— was intersecting with a movement called “grunge”, or unpolished music played by bands in their garages. The particular CD I’m referring to is by southern alternative artist Victoria Williams. And what especially draws me to this musician is her own multiple sclerosis experience.

Williams grew up in a conservative Louisiana family in the 1960′s. Admittedly awkward and quirky, she went on to study French and music in college while playing acoustic guitar for a local band G.W. Korners in venues around Louisiana and eastern Texas. Williams ended up leaving school and traveling to Colorado and eventually California, working at odd jobs and entertaining others with her guitar-playing. She established Los Angeles as her permanent residency in 1984, while landing an unsuccessful recording contract with EMI records.

Williams later signed a contract with Geffen Records and released the 1987 album “Happy Come Home” to little fanfair. At the time she was married to another songwriter (Peter Case), but this ended soon afterward and Williams went on to record her second album “Swing the Statue” in 1990 with an independent label. This began her notoriety as she started to tour with the likes of Neil Young and Lou Reed (1992.)

At around this time Victoria Williams began to experience a lot of weakness on stage, and she found herself having trouble walking. Shortly after, she was diagnosed with MS and needed to use a wheelchair. During this time her musician friends Matthew Sweet, Lou Reed, Pearl Jam, Soul Asylum, and others did a benefit series of concerts and a CD compilation of Williams’ songs for the Sweet Relief Foundation, a fund for artists who do not have health insurance.

Williams rebounded from the intial attack and went on to remarry, appear in the feature film “Even Cowgirls Get the Blues” (1995), and record several more albums—”This Moment: Live in Toronto” (1995), “Water to Drink” (2000), and “Sings Some Ol’ Songs” (2002.) She continued to tour with other bands for several years, and now currently plays guitar and sings with an LA band The Thriftstore Allstars, where she has ongoing show dates at the club Pappy and Harriet’s.

***For further information, see the Victoria Williams Biography and Fansite.

Squiggy Has Multiple Sclerosis

Squiggy, Google Images

The story of David Lander, aka Squiggy, started in Brooklyn, NY, in 1947. As a teenager, Lander attended the High School of Performing Arts in Manhattan and later attended college at NYU and Carnegie Tech.

After moving to Hollywood, Lander did some minor roles and was eventually discovered because of his unique voice and humor as he worked for an answering service. He was then given a job on a radio program called “The Credibility Gap”, a humorous news show.

It was at this radio station that David Lander met his future “Laverne and Shirley” sidekick Michael McKean, and the two put together the team of Lenny and Squiggy. One night, Penny Marshall just happened to be listening to their live show, and had the two audition for her father’s new sitcom “Laverne and Shirley”, in which she was starring. Soon Lenny and Squiggy were nationally known.

I remember watching this show as a kid and just howling over some of the crazy antics. My favorite scenes were when Lenny and Squiggy, the two deranged neighbors, would pop in. Squiggy (did you know that his full name was Andrew “Squiggy” Squiggmann?) always appeared to be some clown with a hair-brained plan that involved the girls. Too funny.

Not so funny is the fact that in real life, David Lander began to experience symptoms of multiple sclerosis shortly after the show ended (1985.) During this time period, there wasn’t a lot to do about modifying the disease— disease modifiers didn’t hit the market until the 1990′s— and Lander’s doctor told him he had a good chance of ending up in a wheelchair.

David consulted with his wife and daughter about what to do. It was decided that he would keep silent in order to protect his career, since aging and being sickly were (and are) highly frowned upon in Hollywood. He went on to do voiceovers for a number of feature films and TV shows, including “A Bug’s Life”, “Jungle Cubs”, and “101 Dalmatians.” Appearing in several other films, he was featured as the baseball game announcer in “A League of Their Own.”
Landers and his family, Google Images
Finally in 1999, Lander publically announced that he had MS. He was not in a wheelchair, but he admitted that he suffered from some of the embarrassing social blunders that multiple sclerosis can cause, such as unsteady walking and dropping things. In 2000, he was named the national MS Society Ambassador of the Year for his work at promoting MS awareness. In the same year Lander published his autobiography Fall Down Laughing: How Squiggy Caught Multiple Sclerosis and Didn’t Tell Nobody.

David Lander’s biggest piece of advice to anyone with MS is to fight it. He strongly advocates the use of any of the disease-modifying drugs and says that when he gives himself an injection, he thinks, “Wow! Look what I did for me.” He still works closely with the Nat’l MS society to promote MS awareness.

Probably the most unique thing about David Lander is his current baseball career: “I use to own a team in Portland. I owned 5 percent of the Portland Beavers, but now I’m a scout for the Seattle Mariners,” he says.

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