Tuesday, July 29, 2008

Texas in the Summer

It is summer in Texas and it is hot. Yesterday it was 105 degrees, and the forecast for today is more of the same.

Heat sensitivity is an MS symptom that is transient, but debilitating when it hits. msdialogue, a Canadian MSmagazine, led me to Helping Through Understanding which presents an article on heat sensitivity. It helps you recognize symptoms caused by heat, explains the symptom, then talks about alleviating them.

Don't get too excited. This short article simply reminds you of tactics you already know. When it gets so hot, a friendly reminder is always welcomed.

Stay cool and stay healthy!

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Monday, July 28, 2008

Same Symptoms = Same Treatment?

If you find someone with similar or even the same symptoms, that doesn't mean the same treatment will work for both of you. Now, we may know why that is true.

Researchers at the University of Michigan tell us that even people with the very same symptoms may have different forms of the disease. In an article published in the latest Journal of Experimental Medicine they tell us they injected mice with different forms of the disease, but they developed the same symptoms.

So far it's just mice, but this research thread may lead to customized treatments in the future based on your particular MS subtype.

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Sunday, July 27, 2008

Why are disabled people so mean?

Certain people have a way of saying things that shake us at the core. Even when the words do not seem harsh or offensive, the impact is shattering. What we could be experiencing is the intent behind the words. When we intend to do good, we do. When we intend to do harm, it happens. What each of us must come to realize is that our intent always comes through. . . .. What we owe to ourselves and everyone around is to examine the reasons of our true intent. ~ Thurgood Marshall quotes (American Jurist and Lawyer. 1908-1993)

I was browsing through questions on Yahoo! Answers as I sometimes do. There are many fun things there. I was particularly drawn to one question: "Why are some disabled people so mean?" It piqued my attention because I am disabled, and I don't think I am mean. The asker explains that he tried to help a disabled woman by opening the door and was greeted with a dirty look, like maybe he was going to rob her, and certainly with no thanks. He said that had happened before, so he was not going to help any more disabled people.

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Friday, July 25, 2008

Dancing in a Chair

bunnymay writes a fun and interesting blog on Disaboom. One of my favorite posts linked to a Washington Post article about Rossana PeƱaloza, prima ballerina, who dances from a wheelchair to challenge perceptions of disability.

Rossana is not paralyzed, but she lived in her chair six months to prepare for her show, and she learned first-hand about people's attitudes towards wheelers.The article is worth reading.

Thank you bunnymay for pointing out this inspiring piece.

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How To Tell the Kids

When you were diagnosed with MS, it was probably devastating at first. I know it was for me.

There is so much to absorb and understand. Let's face it -- MS is not an easy disease to understand. So when you are the parent of small children, and they ask what is wrong, what do you tell them? How can you possibly explain such a complicated disease so it is understood by your kids?

Lorna J. Moorhead has some suggestions. She is clever in her demonstrations to help her 5-yr-old son understand the disease that is attacking his mommy. She uses simple props that he can see and touch, such as strings to represent nerves and an Oreo cookie to show the breakdown of myelin.

She ends with suggested reading. This is fun to read and will prove helpful when talking to kids. Actually, these tactics will undoubtedly help adults understand, too. Check out Lorna's blog MS Moms Managing Our Multiple Sclerosis.

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Tuesday, July 22, 2008

Webcasts Important for MSers

There are two web casts this week that MSers will find interesting, one presented by Disaboom and the other by Healthtalk.

Disaboom, the premiere online community for everyone touched by disability, is presenting the National Forum on Disability Issues. The forum will commemorate the 18th anniversary of the Americans with Disabilities Act (ADA) and address important issues. This is an historic event which allows the presidential candidates to address disability policy in America.

The meeting is scheduled July 26 in Columbus, Ohio, 12:00 - 3:30 PM Eastern Time.

Register Now

Healthtalk presents a webcast called Letting Go of Your MS Guilt. Experts will address the reasons MSers have guilt, including the impact on family and friends. In addition, they will talk about the bad feelings brought about by a hidden disability.

This webcast is scheduled July 24, 5:30 PM Pacific Time.

Register Now

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Saturday, July 19, 2008

Nurse Looking for a Job?

Here's a tip.

AXIS Healthcare is a care coordination organization located in Minnesota. They create personalized plans to allow people with disabilities to live independent lives. Sounds pretty good to me.

Currently, AXIS is searching for nurses to serve as coordinators and liaisons. Check out the AXIS employment opportunities.

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It Counts To Have a Disability

The 2010 Census will be taken in less than two years, and I think it should be interesting to see the increase in the number of people with disabilities. Between aging baby boomers and troops returning from Iraq with disabilities, that segment of the population will be significantly larger than in the 2000 Census and will certainly affect projections, programs and fund allocations. Yes, I think it will be interesting.

How are people with disabilities counted, who is counted as having a disability, and what difference does it make?

I searched for the term disability in the U.S. Census and the only search result was the March 1999 Current Population Survey. That was a long time ago.The U.S. Census Bureau maintains the Current Population Survey (CPS) as a monthly survey updating labor characteristics of the population. On that March report nine years ago, there was only one question (Q59a) concerning disability:

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Monday, July 14, 2008

Disability - A Secret to Share?

About 7 million people require some type of mobility help, a cane, walker, crutches or a wheelchair. Over 125 million Americans have a chronic condition, and some have more than one. Forty million are limited in their everyday lives, but some have no visible signs of a disability.

Many conditions, including MS, affect our lives without revealing characteristics to the public. Having an invisible disability has its advantages in a prejudiced society. An invisible disability means you can pass as "normal" in the working and social worlds. Others don't feel awkward around you, employers don't ask prying questions, people don't stare. All that sounds pretty good, and it's understandable to want to keep one's disabilities hidden.

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Monday, July 07, 2008

Living Disabled in the UK?

You may want to check into Ableize.

Ableize, run and supported by people with disabilities, is a resource of disability and mobility information for the UK and Ireland. It is an extremely comprehensive directory. They say it is a "virtual library of resources." Visit Ableize.

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Friday, July 04, 2008

ESPY Votes

Matt Scott is nominated for an ESPY award.

Sunday, July 20, Justin Timberlake will host the 2008 ESPY Awards, ESPN's tribute to some great athletes, and you get to choose the winners. You can vote for best of the best players, teams, moments in sports, and even best sports movie. One category is best male athlete with a disability and this is where Matt Scott comes in.

Matt has a congenital disability called spinabifida and he is a double foot amputee. So why is he nominated as an athlete? He plays wheelchair basketball in the collegiate division of the NWBA and the US men's national team. Pretty impressive. You may have seen Matt when he starred in the "no excuses" commercials for Nike.

To vote for Matt and in all the other categories, go to the ESPN voting page. You have to register, but it's relatively painless and it's free. Go vote!

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Tuesday, July 01, 2008

Computers and Ability

If you are disabled and you use a computer, there might be something to help you use the computer better or easier. Here is one place to look for adaptive or assistive devices or programs.

Dan J. Gilman experienced a spinal cord injury in 1972 and later became certified as an Assistive Technology Practitioner. He developed a web site Abilityhub.com that provides information on equipment and alternative methods for accessing computers.

There are alternatives for the mouse and keyboard, programs that magnify or read aloud text on a screen, and more. Ability Hub also offers consulting services. Beyond the computer, information is provided for electronic aids for daily living to interact with things such as TVs and lights, often by voice commands. Interested? Check it out.

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