MS Maze

It gets an eye-popping response. An incredulous look. A momentary stare. That’s what happens when you get specific about the numbers. The numbers being the dollars and cents of health care.

Read the rest of my story here.

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.

Multiple Sclerosis– especially Relapsing-Remitting MS– will drive you crazy. I’ve been asked to fly cross country  to give a seminar on a website promotion package that I’ve put together for a national trade organization. The conference where I’m going to speak is in Las Vegas, NV. So I said “Sure, I’ll do it.” and informed Mandy that we’re going to Las Vegas for a few days. I thought she might enjoy a little trip. Well, I said this a few months ago when Mandy was feeling pretty good. But like each of us knows, MS has a sense of humor– it lurks in the shadows, waiting for something that you really want to do before deciding to waggle it’s finger at you and say, “Not so fast– …

Read the rest of Jake’s story here:
Scaredy Scouts

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 woman was tiny, probably 4’11” and all of 90 pounds or so. She looked to be about 70 years-old and had a pleasant face and a warm smile. She sized me up quickly, looked me square in the eye and said, “I’ll hold the door for you… it’s very heavy.”

Read about my brief visit to “bizarro world” here… The Kindness of Strangers

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

Question: What do you do if you are disabled, and you cannot gain entry into a retail store, restaurant, hotel, or other public building? How about if, once you get inside, you find that you cannot take full advantage of services offered?

You can read the rest of this story here:
Handicapped Accessiblity is Just Good Business

“You know, I wonder what it must feel like to be inside a body that’s in such incredible shape.” A second or two went by with no answer. Quizzically, I looked to my right. Mandy was looking back at me. She wore a pensive look when she responded. “I know,” she said. “I was actually wondering the same thing. I can’t even arch my back the way those girls do.” I felt the Beast settle back on the couch between us. It was smiling.

You can read the rest of this story here:
Olympic Musings

My daughter is dating a young man who is confined to a wheelchair as a result of spinal cord injury, and it has profoundly affected the way she sees the world.

You can read the rest of this story here:
“Handicapped People Steal Shower Chairs”

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!

Continue…

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

Widgets… Widgets… We’ve Got Widgets…

Mandy on Multiple Sclerosis Central

Jake on Multiple Sclerosis Central

MS Maze

Conversations Over Dinner

Visit Widgetbox