Monday, June 18, 2012

MS in the Limelight

Let me start off by saying, I'm not in anyway opposing MS getting noticed more by the media. But as we know... MS differs from person to person.

So when we have celebrities diagnosed with MS... for one... people need to keep in mind, they have enough money to get the certain doctors... maybe not even in the same country... and can have the modifications done to their house, get the best meds out there without having to fight insurance companies and so on and so forth.

This is why I feel that when MS does get in the "Limelight" that it's not really showing what MS really is and what it can really do.

In the news segments, they don't speak about that there are daily symptoms of MS... they just speak about the "episodes" aka exacerbations. They never speak about how there is no way to reverse the damage that has been done by these 'episodes'... they don't speak about the side effects of the medications that can TRY and slow the progression of MS...or the side effects of the medications for symptoms... none of that.

So while it's nice to see that MS is making headlines... I wish it was actually about the 'average' person with MS... not some one who has 10 billion dollars to do what they want with their medical care when it comes to their MS.

In any case, they talk about RRMS, they talk about remission like you are disease activity free like you're living life no even noticing your MS.

Then with the triggers, if you're like m and have heat intolerance ... You can't do a lot about that, I live in Central Texas an the highs this week are 100 and over. And I don't want to live my whole summer inside... But the cooling vest I have now... Does NOT work with this heat. It melts instantly!

There was a recent article about Jack Osbourne being diagnosed with MS... The headline was Sharon being quoted "I don't want my son to die."

I read that and was like ... Really? Ya MS can attribute to death but how common is that? Now they're talking about him doing a lot of supplements and exercising and a special diet. Great! But I've done the supplements some help some don't... I TRY and exercise but yet his only issue is his vision. If I work out I have to be careful cause I will pay for it the next day... And the only thing that I can really do that helps me is stretching and water exercise... I'm no stable enough to do workouts and my spasticity causes so much stiffness it's hard to do a lot, not to mention my right side is weaker than the left and that's my dominant size. And my foot doesn't pick up the way it should, so even walking isn't easy.

So my bottom line point is... If people want to know about MS... They should ask the everyday people about it... Because that's the REAL MS life... It's nothing against the famous people with MS... They are just able to have better resources for their MS. If where they live is too hot.. They probably have a house somewhere cool they can escape to.

Okay that's all from me. I'm actually at a softball tournament and tryin to stay cool.



  1. Very good Ashley. My thoughts exactly.

  2. So very true! I thought the People magazine headline was ridiculous as well.