Category Archives: National MS Society

Me and My Optibike: The Ride of a Lifetime

Fancy, huh?! This is not the actual bike I’ll be riding, but it’s pretty close!

I’m going on a little bike ride in a couple weeks.

OK, it’s not a “little” bike ride — it’s a very, very long bike ride. In fact, the longest bike ride of my entire life!

I’m talking about a 100-mile ride along the Southern California Coast, from Orange County to my hometown of San Diego.

It’s the National MS Society’s Bike MS Bay to Bay Tour 2012, Oct. 20-21, and it’s one of the society’s biggest fundraisers of the year. More than just collect cash for the cause, the event also raises public awareness, which is so important to me.

Usually I participate in the event simply by being an “inspiration” for my longtime friend Matt’s team, Land Rover San Diego. Of course, I’m flattered by this year after year and I’m so proud of what the team accomplishes — Matt puts in so much work as team captain! I also serve as one of the MS Champions for the event, sharing my MS story and providing a face to the cause for riders who don’t personally know someone with MS.

But this year is not like the rest. I am actually going to ride.

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Jack Osbourne’s MS Diagnosis, and the Fine Line Between Hope and Reality

I’m not too happy with the recent People magazine cover featuring Sharon Osbourne and her son Jack Osbourne, who recently found out he has multiple sclerosis.

The magazine’s cover headline blares: “I Won’t Let My Son Die.” That’s followed by a promo for the exclusive interview: “Sharon and Jack Osbourne on the diagnosis that has the 27-year-old fighting to save his vision, his future and his life.”

My message to Sharon Osbourne: Multiple sclerosis is not a death sentence!

A little over-dramatic? I’d say so.

I know that the publishing industry is in a sad state today, and headlines like that help sell magazines. But I just hate the impression that such sensational cover language can leave on readers — especially people who are newly diagnosed with MS (about 200 people get the diagnosis every week) or those who know nothing about the disease.

Those people can easily think that MS is a death sentence, and that’s a perception I’m always fighting to change.

As a mom, I can understand how devastating it would be to find out that your child has MS. But come on, even if MS was imminently deadly, what is Sharon Osbourne really going to do to stop her son’s disease?

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I Really Need to Pee!

Let’s talk bladders. It’s a big topic on my mind right now because in the last few weeks I’ve been feeling the effects of bladder dysfunction — an MS symptom that’s plagued me since my early 30s.

I’ll admit that this isn’t something I love to discuss, but it’s an important issue because so many people with MS deal with it. The National MS Society says at least 80 percent of people with multiple sclerosis have bladder dysfunction. It’s invisible and uncomfortable. And unless you experience it, it’s difficult to comprehend the physical and emotional toll it takes on you.

Before I get into my personal story, here’s a quick explanation of bladder dysfunction — if you don’t mind some nitty gritty details. When people with a normal, healthy bladder feel like they have to pee, they can hold it until they know that they really gotta go. Then they can hurry to the toilet and Continue reading

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A Message That’s Worthy of the Share Button

In honor of Multiple Sclerosis Awareness Week, March 12-18, I’m posting this well-made video that I hope you will share with your sphere of contacts! The message is so true: Almost everyone knows someone with MS, whether they realize it or not. More than 2.1 million people in the U.S. are living with this disease, and there’s a new diagnosis every hour of every day. MS really does impact us all.

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My Radio Interview: A ‘Bedeviling’ Disease

Last weekend I had the chance to share my MS story on the radio. It was a great opportunity to shed light on multiple sclerosis for listeners who aren’t familiar with the disease and the dire need for a cure.

The local San Diego radio show “Community Connection,” which airs on KOGO 95.7 FM/AM 600, invited me and my friend Richard Israel, president of the National MS Society’s Pacific South Coast Chapter, to answer some questions about the “chronic, unpredictable and disabling” disease. If you’d like to listen to what I said, here’s a link: March 2012 KOGO Radio Interview.

The interviewer correctly noted that people with this disease often live for decades with symptoms before they finally get their diagnosis. For me, that was certainly true. My symptoms started 11 years before my doctor told me I had MS.  I was a freshly-minted teenager when I was diagnosed with Epstein-Barr virus and lost the vision in my left eye, part of my ongoing journey of chronic optic neuritis. Continue reading

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An Old Video, a Little Piece of Me

As I prepare for the big Walk MS event in late April, I’ve been spending more time than usual on the MS Society website. The other day I came across this video — talk about a blast from the past!

In 2005, the San Diego chapter of the National MS Society made the video about my journey living with MS. The goal was to raise awareness by attaching a face (mine) to the disease.

Hard to believe that it was seven years ago, but not hard to believe when I see myself on video and hear my son Jake’s little boy voice. He’s now finishing up his senior year in high school, and is very much a man!

In many ways, this is difficult for me to watch. Not just because my speech was slow and Continue reading

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Why I Walk, and Why You Should Too

Multiple sclerosis is different for everyone.

I have the kind of MS that stole the vision in my left eye when I was 13.

Join Team Hope for Walk MS in San Diego

Put your walking shoes on and join Team Hope on April 28.

I have the kind of MS that threatens me with blindness when my “good eye” goes bad, requiring a few days of IV steroids to recover.

I have the kind of MS that required implant surgery so my bladder can empty without having to self catheterize five to six times per day.

I have the kind of MS that prevents me from walking too far without my feet or legs going numb.

I have the kind of MS that makes being a single mom the most difficult yet important and rewarding job in my world.

I have the kind of MS that anyone you know could be diagnosed with tomorrow.

I have the kind of MS that needs to be cured.

That’s why for 17 years I’ve been captaining a team in San Diego for Walk MS, one of the National MS Society’s Continue reading

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The Mystery of Multiple Sclerosis

No known cause, no known cure.

That’s one of the frustrating parts of living with MS.  In the United States today, there are approximately 400,000 people with multiple sclerosis, and 200 more people diagnosed every week, according to the National MS Society.

Worldwide, MS affects an estimated 2.1 million people.

Whether you’re new to the world of MS or you’ve been here for decades, like I have, it’s good to be armed with answers to people’s questions about the disease.  While there is a lot of uncertainty, there is also Continue reading

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Inked in Hope

Everybody needs hope.

My favorite word is hope. Anyone who knows me well, knows that’s my word. About two years after my MS diagnosis, I clung to that word knowing that I needed something to get me through the tough times that were ahead.

My favorite verse from the Bible says: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to  harm you, plans to give you a HOPE and a future.” ~ Jeremiah 29:11

I named our boxer puppy “Hope” nine years ago.

I named my MS Walk Team “Team Hope” in 1999.

People have asked me before what I’m hopeful for. I hope for a cure of course. But I also hope that I don’t lose vision in my one good eye. I hope that I can one day see and play with my grandkids. I want to be able to walk, travel around the world, and continue my Continue reading

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