Archive for August, 2008

MS: Misunderstood Around the Globe

Written by Mandy on Friday, August 29th, 2008 in In The News, Links, State of Health Care.

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

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 Kindness of Strangers

Written by Mandy on Wednesday, August 27th, 2008 in Emotional Issues, Links.

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

Olympic Dreaming

Written by Mandy on Monday, August 25th, 2008 in Emotional Issues, General, In The News, Links.

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

Handicapped Accessibility - Good for Business

Written by Mandy on Wednesday, August 20th, 2008 in Emotional Issues, Links.

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

Olympic Musings

Written by Mandy on Monday, August 18th, 2008 in Caregiver's Corner, Emotional Issues, Links.

“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…

Virginia Easy Access: Community Resources at Your Fingertips

Written by Mandy on Friday, August 15th, 2008 in Extras, In The News, Links.

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

Widget Mania

Written by Mandy on Monday, August 11th, 2008 in Extras, Links.

Widgets… Widgets… We’ve Got Widgets…

Mandy on Multiple Sclerosis Central

Jake on Multiple Sclerosis Central

MS Maze

Conversations Over Dinner

Visit Widgetbox

Good News from My Insurance Company

Written by Mandy on Monday, August 11th, 2008 in State of Health Care.

In previous posts, What Health Care Problem? It’s a Great System!, Multiple Sclerosis and Stress Go Hand in Hand, and How About a Dose of Stress with your Injection, I chronicled the monthly runaround involved in filling my prescription for Copaxone (R).

Well, I’m happy to report that as of this month — seven months into the saga — the powers that be (that would be my beloved insurance company) have finally corrected the problem. According to a customer service rep, my troubles are over. Next month, when it is time to reorder, it will require only one phone call.

Oh, happy days! Just the same, I think I’ll hold the celebration until next month.

Hmmm… Now if we could just do something about that Tier 4 co-pay… but that’s another issue altogether.

Online Friendships… One part of the treatment regimen

Written by Mandy on Monday, August 11th, 2008 in Emotional Issues, Links.

For people with MS, getting out and about can be difficult, if not impossible. The social life takes a hit and we find ourselves becoming isolated if we’re not careful. The friends we meet online bridge the gap.

Read article at Health Central…

MS: Work with it, around it, and through it

Written by Mandy on Thursday, August 7th, 2008 in Emotional Issues, Links.

Lately there has been a lot of attention given to people who, in mid-life, are redefining themselves. Count me in.

Continue…

Summer 2008 Issue of MSFocus Magazine

Written by Mandy on Tuesday, August 5th, 2008 in In The News, Links, State of Health Care.

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

Tysabri: It Comes Down to Choices

Written by Mandy on Monday, August 4th, 2008 in In The News, Links, Medications.

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



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