MS Patients Share Their Stories at NYC Event Featuring Montel Williams

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by Larry Luxner |

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Mike O., Karen B. and Faith A., all MS patients, attend a New York event co-sponsored by Novartis and the MSAA.

After months of preparation with storytelling experts, three ordinary Americans with multiple sclerosis (MS) took the stage in New York late last year to share their MS journeys.

The three joined TV personality Montel Williams at an event inaugurating My MS: Second Act, a joint effort co-sponsored by the Multiple Sclerosis Society of America (MSAA), Novartis, and The Moth, a New York-based nonprofit organization.

Mike O., Karen B. and Faith A., all MS patients, at a New York event co-sponsored by Novartis and the Multiple Sclerosis Association of America. (Photos by Larry Luxner)

ā€œStorytelling is the stuff of life, and there is so much power in not only telling your own story, but in listening to other peopleā€™s stories,ā€ said Amanda Montague, MSAAā€™s vice-president of education and healthcare relations.

Williams said both Novartis and MSAA have ā€œworked as hard as they canā€ ā€” along with The Moth ā€” to help MS patients tell their own personal stories.

ā€œIn doing so, itā€™s important that you share those stories with as many people as you possibly can, because hope should be the mantra of the day,ā€ he said. ā€œYes, this disease is going to progress, and 80% of people with RRMS [relapsing-remitting MS] will end up with SPMS [secondary progressive MS]. Itā€™s going to happen, but that doesnā€™t mean our SPMS will be the exact same as someone elseā€™s,ā€ he said.

ā€œWe still have abilities, even if that walker doesnā€™t work anymore ā€” even if itā€™s just one finger,ā€ Williams said. ā€œRemember, as much as medication and Ā doctors and treatments can help, Iā€™m a firm believer that the love you get from those around you is just as powerful.ā€

Leverne Marsh, vice-president and head of the U.S. neuroscience franchise at Novartis, added: ā€œWe all have a role to play. For us at Novartis, in partnership with MSAA, we must do our part to elevate patientsā€™ stories as frequently as we need to, and as frequently as the opportunity will allow. Many MS patients feel socially isolated, that they donā€™t belong anywhere, that nobody is listening. But thereā€™s incredible optimism and resilience here.ā€

Karenā€™s story: Empowerment

In 1996, Karen B. was a happily married woman with a full-time job and an inquisitive 3-year-old daughter named Amy. Then, one day, she rubbed her eyes and it hurt.

ā€œWithin 48 hours, I was completely blind in one eye. I was terrified,ā€ Karen said. ā€œI saw doctors, had tests done, and then my vision returned and life went back to normal. I ignored the fact that one of the doctors had said it was either a brain tumor or MS ā€” and the fact that one of my sisters had MS.ā€

Karen B., an MS patient, talks about her experiences with the disease.

Eventually, Karen received a formal diagnosis of RRMS, but downplayed the diagnosis.Ā In 2001, she started on a disease-modifying therapy, and six years later gave birth to her second daughter, Maggie.

ā€œOne summer, we went to the Minnesota State Fair. It was crowded, loud and hot ā€” and it smelled like deep-fried something on a stick. To experience any of it, you have to be able to walk,ā€ she said. ā€œBut as we walked, my legs felt like they were made of concrete. We got a wheelchair and I made jokes, so the girls wouldnā€™t see how upset I was.ā€

That day, as crowded as it was, Karen remembered, ā€œI felt very alone ā€” almost invisible, and it got very quiet, and I started to cry. At that moment, I realized that all the jokes in the world werenā€™t going to change the fact that I had this disease.ā€

As her daughters got older, they became more independent and were able to help Karen, whose MS had advanced rapidly.

Even so, she said, ā€œI wanted to set a good example, but wasnā€™t sure how. I myself didnā€™t have a degree, so I started taking college courses.ā€

One day, Karen wrote a letter to her state representative asking him to support a bill on MS donations. She mailed the letter and forgot all about it ā€” but the recipient didnā€™t.

ā€œShortly after I finished my class, I got a call at work asking me to testify about the MS bill at the state capital,ā€ she said. ā€œThe next morning, I found myself at a table in front of the Congressional Tax Committee. I had no idea what I was going to say, so I tried to stress the importance of supporting MS patients. Later I was told that Iā€™d be honored at the MS Gala. I never thought that writing a letter would bring about such an impact.ā€

Since then, Karenā€™s condition has deteriorated. She uses a walker all the time now, and sheā€™s divorced. But, she said, ā€œI havenā€™t stopped trying to make a difference.ā€

Mikeā€™s story: Community impact

Mike O. was very good at what he did. A hard-driving New Jersey salesman with his own business, he was doing just fine ā€” until one morning around 9 a.m., when he pulled off I-287 in agonizing pain.

ā€œI had been experiencing pain and fatigue for years, but I loved my job. Plus I had a wife and three kids, and a giant mortgage to pay off,ā€ he recalled. ā€œI made it to my sales appointment, but my customer wanted to call 911. When I got home that night, I talked to my wife, Michelle, about what had happened.ā€

Mike O., an MS patient from New Jersey, talks about his MS.

The sharp pain went away, but then it happened again, and another time. Mike ignored his symptoms, insisting to himself, ā€œI donā€™t go to the doctor. I just want to work and provide for my family.ā€ But then he could no longer ignore the warning signs.

ā€œFinally one morning, my wife said we had to go to the emergency room, that I couldnā€™t continue like this,ā€ he recalled. ā€œI remember the hospital doctor coming in and saying something that blew my mind: ā€˜The ER is for sick people. If youā€™re not feeling well, go to your doctor. I was completely embarrassed and frustrated. This was the start of my journey of misdiagnosis.ā€

Over the ensuing years, Mike was treated for both Epstein-Barr virus and Lyme disease ā€” mostly at his own expense. Meanwhile, he struggled to drive and even complete simple tasks.

ā€œCognitive fog and falls continued. My sales numbers were dropping and my house was going into foreclosure,ā€ he said. ā€œAfter finally totaling my truck on the Garden State Parkway one night, I found my way to the correct doctors.ā€

Following a spinal tap and magnetic resonance imaging (MRI), Mike was correctly diagnosed with RRMS that was already transitioning to SPMS.

ā€œThis disease contradicts everything I was ever taught about how to succeed in life: work hard and have lots of energy,ā€ he said. ā€œI finally had to go on Social Security disability. When youā€™re diagnosed with MS, everyone wants you to talk with someone else who has MS. So I went to a support group of MS patients who could laugh about their disease. I hadnā€™t laughed in a long time.ā€

Mike ended his talk with a new job title for himself: ā€œI am still a super-hero dad. Iā€™m just a super-hero dad with a cane.ā€

Faithā€™s story: Independence

When Faith A. was 16, she went to the 1969 Woodstock concert without permission. Exactly three decades later, she was diagnosed with RRMS.

ā€œBut for about 10 years before that, I went from doctor to doctor, and was told, ā€˜Itā€™s all in your headā€™ or that it was a female issue. I was depressed, because I dealt with so many incompetent doctors,ā€ she said. ā€œThen I finally found a doctor who only deals with MS patients, and for the first time I had the answers I needed. Sheā€™s worked with me ever since.ā€

Faith A., an MS patient from New York, talks about her experiences with MS.

Faith said she was never worried that she had MS.

ā€œIt was a relief,ā€ she recalled. ā€œI could finally put a name to what was going on. No one believed me, but I never gave up.ā€

For years, Faith had worked for a subprime auto loan agency that garnished the wages of people who didnā€™t pay their bills on time.

ā€œIn August 2014, it was time for our yearly review, and it wasnā€™t my best year,ā€ she said. ā€œI was great at what I did, but MS was finally kicking my butt. One day, at our normal monthly meeting, an HR person came in and told our whole department we had 10 minutes to clear our desks. I was stunned and wanted to die. I had given my whole life to this company.ā€

Faith had just purchased a brand-new condo, and suddenly had no idea how she was going to pay for it.

ā€œAs my symptoms got worse, my daughters urged me to take it easy,ā€ she said. ā€œI donā€™t want help and I like to be independent. Iā€™ve always been an ā€˜Iā€™ person; now I have to be a ā€˜weā€™ person. I have to ask for help.ā€

Faith now relies on her monthly disability check to pay her bills, ā€œmy daughter to help me, my son to keep me laughing, and my doctor to care for me.ā€ She says she knows that itā€™s in her own best interest to ā€œloosen the reins a littleā€ and get out of the way.

ā€œI now have SMPS, brain atrophy, cognitive issues, tremors, and spinal degeneration, and Iā€™ve fallen four times this year,ā€ she said, adding that sheā€™s also had cancer three times and shingles seven times. ā€œOne of those times I fell, I was on my way to 7-Eleven to buy a Slurpee. After I fell, I made sure I got that Slurpee. I wasnā€™t leaving without it.ā€