Aug
22
MS Patient, Singer Gives to Others – WSJ.com
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In true country-music fashion, Clay Walker can boil his life down to a simple refrain: “I don’t have to think about tomorrow, I don’t need anything money can buy, I don’t have to beg, steal, or borrow, I just want to live until I die.”
The sentiment from his 1994 hit single, “Live Until I Die,” still holds true for the singer, who was diagnosed with multiple sclerosis more than a decade ago.
What he initially viewed as a death sentence turned into a second career with the 2003 launch of Band Against MS, a nonprofit to support research and help people with multiple sclerosis.
Now, through the foundation, he’s making a $50,000 donation to fund pediatric multiple sclerosis research at Stony Brook University Medical Center in Stony Brook, N.Y., bringing his total giving for research of this kind to more than $2 million.
“Stony Brook is taking the fresh ideas of doctors who aren’t just running down the same trails,” Mr. Walker says. “There’s no better way to start looking for a cure than by working with children.”
About 400,000 people in the United States have the chronic, neurological disease and 200 others are diagnosed each week, according to the National Multiple Sclerosis Society.
Until this decade, multiple sclerosis had been seen as an adult disease, says Lauren Krupp, director of the national Pediatric MS Center at Stony Brook University, whose research Mr. Walker’s donation will fund.
The center itself was founded in 2006 to work specifically with clinical care and scientific research of children and adolescents with multiple sclerosis.
Ironically, Dr. Krupp says it makes more sense to study the disease in children, rather than adults, because children haven’t had as much exposure to the environmental toxins that many doctors think contribute to the cause of the disease.
Read the rest via MS Patient, Singer Gives to Others – WSJ.com.
May
26
O’Jays Singer Reveals Long Battle With Multiple Sclerosis
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By Belinda Goldsmith
Reuters
CANBERRA
Singer Walter Williams from R&B group The O’Jays seemed to have a charmed life, but for nearly three decades he kept a secret from his fans — he was suffering from multiple sclerosis (MS).
However to mark World MS Day on May 26, Williams decided it was time to go public with his health issues to let other MS sufferers know that it is possible to lead an active life despite the chronic and often disabling disease.
“I have done well with MS and I want other sufferers to know that they too can lead a normal life,” Williams, 67, told Reuters in a telephone interview.
“Why now? Well, it’s a good time to come out and let people know there is medication for this now that helps a great deal. When I was diagnosed they told me I had 20 years to live and there was no cure but it has all changed.”
Williams is a founding member of the The O’Jays who were pioneers of 1970s soul music with hits like “Love Train,” and “Use Ta Be My Girl.”
He first realized something was wrong while on tour in 1983 and he began getting numb in his feet, legs and torso. At the age of 39 he was diagnosed with MS, the inflammatory autoimmune disease that attacks the central nervous system.
Over 2 million people worldwide have MS which affects about three females to every male with symptoms often starting to show when people are in their early 30s.
“I knew nothing about MS so when I was diagnosed I just freaked out. The doctor told me to get my life in order as I probably only had 20 years to live,” said Williams.
“At first I did the pity party thing and felt sorry for myself, but then I got angry and decided to fight it. I started exercising more to make my body strong and started to eat right and keep a great attitude. I slipped a lot but I got through it.”
read the rest: O’Jays Singer Reveals Long Battle With Multiple Sclerosis.
Mar
25
Learning to Trust Myself
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There was, at first, the occasional numbness, but as friends were quick to point out, everyone gets pins and needles, right? Then there were the words I couldn’t find . . . but that happens to all of us as we age. Stranger symptoms came and went. My speech was slurry, and then not. I was depressed, and then not. I was confused and overwhelmed, but then moments later clearheaded and capable.
I’m 45 now, and for years I suspected I had a biological brain illness. Yet I was told by many medical professionals, including my own husband, that there wasn’t anything wrong with me. Or rather, they said, there was something wrong, but not what I thought. I was not physically ill, I was just nuts. They suggested that I was simply imagining my troubles.
I’m not the first woman to be jollied into believing it’s better to be neurotic than ill. In fact, several studies have shown that women’s medical problems are more likely than men’s to be interpreted as emotional issues or complaining, a mistake that can have grave consequences. What was unusual in my case was that the people who scoffed the loudest were those I trusted the most: my husband, several close friends and a few relatives—all doctors.
When I finally got a diagnosis, the verdict proved that I was not, as my husband had frequently said, a hypochondriac who was “too tuned in” to my body. It proved that my intuition had been correct. So my story is about more than sleuthing out the source of my symptoms. It’s also about a patient’s journey from self-doubt to self-trust.
read the rest via Learning to Trust Myself – MORE Magazine – For Women 40 Plus.
Mar
24
Online Social Networks Bridge Gaps for Chronically Ill
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A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline.
For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role.
“It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.
People fighting chronic illnesses are less likely than others to have Internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released Wednesday by the Pew Internet and American Life Project and the California HealthCare Foundation.
“If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population,” said Susannah Fox, associate director of digital strategy at Pew and author of the report.
read the rest via Online Social Networks Bridge Gaps for Chronically Ill – NYTimes.com.