When a Celebrity Has MS

One of the biggest MS discussions in the past week has been Jack Osbourne's diagnosis with the disease.  Personally, I've run through a wave of emotions and thoughts as I've been processing the coverage of his diagnosis.

Sympathy - Jack's diagnosis came after experiencing decreased vision in one eye, which ultimately became so bad that he had no central vision in his right eye for a period of time.  I understand all too well what he experienced, since that's the symptom that led to my diagnosis.  The condition is called optic neuritis, which means that there is a lesion on the optic nerve that impacts vision in the affected eye.  When it happened to me, I did some online research.  The good news?  For a large percentage of optic neuritis sufferers, the vision returns to almost as good as it was before the episode.  The bad news?  A majority of optic neuritis sufferers either already have MS or will be diagnosed with it between 5-10 years of that episode.  I can only imagine the fear, confusion, and other emotions he was dealing with, based on what I dealt with myself.

Helplessness - Jack's mother, Sharon, has been expressing so many of the same things that my mom did when I was diagnosed.  Had she done/not done something during pregnancy/childrearing that could have prevented the MS?  It was painful watching my parents dealing with their helplessness as their daughter dealt with something that they couldn't fix.

Frustration - There are so many sources of frustration.  When you're diagnosed with MS, you're suddenly and vehemently reminded that you're not in control, that any moment your own body can turn on you.  There are ways to try and improve your situation, but there are no guarantees.  For me, one of the biggest frustrations is the misinformation and sensationalism about MS.  Is it an incurable disease?  Yes.  Is it debilitating to many of those striken by it?  Yes.

Is it fatal?  NO.  But that doesn't stop magazines like People Magazine from putting titillating headlines on its cover ("I won't let my son die") to feed the media frenzy.  A public figure's diagnosis can increase public awareness, but it can spread misinformation.  If you follow Jack Osbourne on Twitter, you'll see that he's as annoyed with this media tendency as I am.

Hope - Yes, MS is currently incurable.  Yes, right now there are limited options for treating the disease.  But there are a lot more options now than there were when I was diagnosed 10 years ago, and there are a lot more in development and testing.  While the current picture for MS is definitely not sunshine and roses, the end of the tunnel is definitely brighter than it has been.

Will there be a cure for MS in my lifetime?  Don't know.  And not sure that's the right thing to be looking for right now.  I keep thinking back to a speech by David Lander (Squiggy from "Laverne and Shirley") at an MS conference about 10 years ago.  There are so many different experiences with MS.  Would a cure help many or just a few?  What would it mean to "my" MS?    But I don't want the talk about whether or not MS can be cured to interfere with the efforts underway to address MS symptoms and relapses.

So what do I have to say about all of the media frenzy surrounding Jack Osbourne as he deals with this diagnosis?  Godspeed, my colleague.  We didn't want to be put on this journey together, but we are.  Don't let this illness get in the way of the joys with your loving family (especially that sweet new baby you have).

Hot Fun In The Summertime

Summer's here, and it brings a whole set of challenges.  How do we beat the heat?  How do we exercise safely?  

When I first got diagnosed with MS, my neurologist encouraged me to go swimming.  Last year, I found out what a disaster it could be to try and swim in the ocean.  Oh, the ocean water wasn't the problem - I just couldn't walk in the sand to even get to the ocean.  Dry sand + MS mobility issues = nightmare.  And the pool scared me.  Slip sliding everywhere did not appeal to me.  But I've learned that there putting together a simple survival kit alleviates my fears and makes it easier for me to enjoy pool time.

If you want to know what's in my survival kit, check out my article on the Yahoo Contributing Network here.  Yup, I'm a writer now.  I'd like to expand my blog from being a simple journal of one woman's MS and take a broader focus.  I'll be writing articles, following other blogs, and contributing to other sites as appropriate.  So if you have any ideas to help me increase my presence and participation in the online world, please let me know.

Walking the Tightrope

I'm watching Nik Wallenda walking the tightrope across Niagara Falls as I write this.  I wasn't going to watch this stunt, but I'm finding myself inspired by his walk.

He's talking to the reporters as he walks.  He's pumping his fist, kneels for the crowd, and still is moving forward.  This is such a wild journey, and it shocks me that he is able to keep his eye on the prize with all of the distractions.  The wind, the mist, the wet wire, the crowd, the reporters...all of them could be an excuse for failure.  Instead, he's smiling and keeps moving forward until he crosses to the finish.

One of his responses to the reporters just blew me away.  When asked about the challenge, he talked about all of the people facing obstacles and how they should just focus on the accomplishment.  He didn't dwell on the obstacles, he just kept moving forward.  He just told the Canadian border officials that the purpose of his trip was to inspire the people around the world, and he did that for me.

Take your time.  Step by step.  Sounds so simple, but it wasn't simple for him.  And those with multiple sclerosis have our own tightrope to walk every day.  It's so easy to lose the concentration, lose the focus, lose the faith.  It seems so easy to just focus on the next step, but we know it's not the easiest to execute in reality.  Wind gusts and mist are replaced by fatigue and spasticity.

Wallenda cited his training, his focus, his prayers, and his family as the reasons for his success.  While we can't be trained to conquer MS, we can learn ways to adapt and ease the struggle.  We may have trouble focusing sometimes due to cognitive challenges, but we can try to train our brain and take care of ourselves so that we struggle a little less.  We may feel horribly alone, that no one can understand what we're dealing with, yet we can reach out for support from friends, loved ones, and a higher power if we believe in one.

Take your time.  Step by step.  Sounds so simple, but it's not simple for us.  We may not have chosen to walk this tightrope, but it's the only path ahead for us.

Meal Planning

Meal planning can be an effective weapon in the battle against MS, allowing for increased nutrition and fatigue management.  Check out the latest post on The MS Mom:  Meal Planning 101.