MS Maze

The necessity of advocating for ourselves when it comes to health care is detailed in a report by CNN Medical Correspondent Elizabeth Cohen. It is a piece of advice I shall take to heart.

“I learned that I must always remain in control, double-check everyone’s work, and trust no one completely. I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions.” - Actor and Author Evan Handler

The economic and political news we are witness to lately is disheartening on so many levels.

The political mudslinging is ugly and serves only to distract attention from the real issues facing our country. The economic downturn has us deeply concerned about the huge losses to retirement accounts, plummeting home values, and inflation eating away at our stagnant wages. And we are still at war.

All this talk of a deepening recession and economic crisis has me wondering. Can I still carry on about what I consider to be a health care crisis? In the great scheme of things, is multiple sclerosis and its associated financial burden important anymore? Does the enormity of our country’s financial freefall cancel out concerns about MS and other chro…

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I was surprised to meet up with a train on my visit to a local shopping mall. I was even more surprised to find that I was supposed to give it the right of way. Life with multiple sclerosis can be strange and complicated.

Read, “Hey, You with the Cane… Could You Speed it Up?”

We just received an update on a previous post, MS: Misunderstood Around the Globe. Tae Kwon Do silver medallist Kirsten McLaughlin sent this message:

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Kirsten McLaughlin Says:
September 7th, 2008 at 7:24 pm e

Hi there, I’m Kirsten McLaughlin and I just want to let you know that the decision has been overturned, im have now been awarded higher rate care and mobility components. Also thank you for your support by putting my story on your site.

Best Regards
Kirsten McLaughlin

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It’s a pleasure to share good news once in awhile! Thank you, Kirsten. Our thoughts are with you.

Public release date: 3-Sep-2008
Contact: Anne Carlantone
acarlantone@robinleedyassociates.com
914-241-0086
Robin Leedy & Associates, Inc.

Montel Williams MS Foundation announces recipients of 2008 research grants

Organization distributing $325,000 to forward research on early detection, myelin restoration and new treatments for multiple sclerosis… Read full press release here.

This press release about research grants given by the Montel Williams MS Foundation, contains a bit of fascinating information:

“multiple sclerosis affects more than one million people in the United States”

That’s a statistic that I hadn’t heard yet. The National MS Society generally puts the number at 400,000, which I’ve always thought was too low. Interestingly, this topic was just discussed on The Health Central Network’s Multiple Sclerosis Central.

Obviously, there is a lot of confusion on just how many people have MS.

I like to smile and laugh. I like the people around me to feel good and I do attempt to hide symptoms sometimes. I do that because I don’t want to invite sympathy or questions. I do that because I need time off from it all. But I am unable to hide my symptoms from all of the people all of the time, or even some of the people all of the time.

The the rest of my story here:

My MS is Stronger than My Smile

Scotland has one of the highest rates of multiple sclerosis in the world. Despite this, their understanding of MS appears to be lacking — and their system of disability benefits leaves a lot to be desired.

We’ve got to continue our quest to educate — here and around the globe.

This story is a real heartbreaker.

Exclusive from DailyRecord.co.uk: Martial arts champion hit by multiple sclerosis denied benefits

Aug 28 2008 By Lachlan Mackinnon

A MARTIAL arts champion whose life was “destroyed” by multiple sclerosis has been refused benefits - because she can still talk.

Tae Kwon Do silver medallist Kirsten McLaughlin, 33, requires round-the-clock care from husband Alan, 34.

But she has been denied disability living allowance as the authorities claim she only needs “comfort and assistance” and can still “communicate”.

Click here to read the full story at DailyRecord.co.uk

The world won’t soon forget the regal beauty of Nastia Liukin and the awe-inspiring power of Shawn Johnson as they graced the gymnastic apparatus during the 2008 Beijing Olympics. Neither will I.Their faces betrayed none of the physical challenges and injuries they surely endured during years of practice and preparation. Cool and confident, they majestically glided through the competition, their routines appearing almost effortless. Twisting and turning, tumbling and flying, they seemed to defy the laws of gravity. They stole my heart and my eyes watered along with theirs as they received their honors. Their youthful smiles and jubilation were downright contagious. For a few moments I, too, felt victorious.

Read the rest here:
My Olympic Dreams

Patients with chronic illnesses, who could need the drug for years, are getting hit hardest by the change, says Dan Mendelson, president of Avalere Health, a national health-policy analysis firm.

“It gets to the fundamental question of ‘What is insurance?’ ” he said.

As advances in medicine become ever more costly, insurance that requires heavy cost-sharing from patients for pricey drugs is likely a “microcosm of medicine’s future,” predicts a commentary in a recent New England Journal of Medicine.

The authors warn: “At some point in our lives, we may all join that small pool of users of high-cost care.”

Read article in its entirety:

There are many tools at our disposal, and if we wish to maintain our independence, we need to make use of them. I would feel pretty foolish if I had to stay home and miss an outing because my pride would not allow me to use a cane in public, or to pull out my handicapped parking placard.

Life is too short and too uncertain to allow any of it to pass us by. If it exists and will help you to stay in the game, I say take advantage!

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The state of Virginia has created a very useful website for elderly and disabled residents.

Providing information on emergency preparedness, financial help, housing, transportation, and understanding your rights, Virginia Easy Access puts community resources right at your fingertips!

Visit Virginia Easy Access

Yours truly is featured in the summer 2008 issue of MSFocus Magazine. The article, “The Financial Reality of Multiple Sclerosis” is on pages 10-11.

MSFocus - Multiple Sclerosis Foundation

The ongoing controversy over Tysabri, understandably, has many multiple sclerosis patients on edge. Count me in.

You can read the rest of this SharePost by visiting:
Tysabri: It Comes Down to Choices