Sunday, October 28, 2007

You Are Invited

The world's biggest blog party has started!

The blog party is an online event between Oct. 27, Make a Difference Day, and Nov. 17, Family Volunteering Day. The idea is to spread the word about charities, philanthropies, and other events that make the world a better place.

When I think of someone who has made a difference for the MS community, I think of Sylvia Lawry, one person who made a difference that is felt worldwide.

In 1945, after her brother had spent fruitless time and effort trying to find a cure for his disease, MS, she placed an ad in the NY Times looking for help from someone who had been cured. She received many replies, but they were from MSers who hoped she had found the cure and would share the news. She saw a need. The next 50 years of her life were dedicated to ridding the world of the disease that had attacked her brother.

How can one person make a difference? Sylvia Lawry did it by founding the National MS Society (NMSS), the National Institute of Neurological Disorders and Stroke (NINDS), and the MS International Federation (MSIF).

One person, touched by her brother's plight, influenced research, disease management, and public policy in her country and the world. Wow.

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Saturday, October 27, 2007

Anger Makes Me Mad

Today I wrote about anger on Disaboom. I really don't understand anger because it seems like much ado about nothing. Why get angry and waste all that time and energy? I have so little energy and not much time, so when I get frustrated, I try to focus on something positive. Why bother with anger? It makes me angry to see people acting out in anger. Anger is contagious, but so is a smile. I choose the smile.

Wheelchair Junkie
has another idea about anger management. This picture is pretty good -- don't pass it by. While you are there, take a look at this possible new gadget. Here is a college student in Ireland designing a really high-tech wheelchair and he is open to suggestion. Now is your chance to make a difference in disability equipment.

Enjoy your day and manage your anger!

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Saturday, October 20, 2007

Patients Like Me Are Signing Up and Making News

I first wrote about Patients Like Me in early September when Garry found it. There were more than 1100 MSers already signed up. It has been less than six weeks and now there are 1658 MSer members.

Patients Like Me was named as one of 15 companies that will change the world by Business 2.0 and Not only is this site valuable as a social network for patients, but it is a valuable source for medical researchers. Sounds as if it might be worth checking out, don't you think?

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Writing for Disaboom

I have been writing for Disaboom.

This weekend we took a short little jaunt. Today I published a story about my trip
to San Antonio to visit my mother.

Last week my topic was caregivers, specifically those everyday warriors who take on the role because a loved one needs care. It is hard to be disabled, but it is equally difficult when someone you love becomes disabled.

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Sunday, October 14, 2007

Looking for MS Sites?

If you are looking for sites written by and about MS, take a look at Brain Cheese. She has gathered 100 MS blogs. Not bad.

While you are there, read through her blog. Often interesting, always easy and fun to read. This is a good one.

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Smoking and MS

Are you am MSer who smokes? You might want to reconsider that because Smoking Worsens MS by increasing brain tissue shrinkage. according to the Buffalo Neuroimaging Analysis Center.

But wait,

A new study in the Netherlands says there is no correlation between smoking and MS progression.

We know smoking is not good for us, but there is a controversy whether it affects MSers any differently from everyone else. We know it doesn't improve MS, but we cannot agree if it is particularly harmful to MSers. I guess this decision has to be made regardless of MS.

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Thursday, October 11, 2007

Young People and Multiple Sclerosis

When children or teenagers have MS, they have the same questions as adults. When children or teenagers have a parent with MS, they have questions parents may not know how to answer. When children or teenagers have questions, they often turn to the Internet for answers.

The most popular sites for young people are listed by Alexa.

Included are a variety of sites such as Children's Hope for Understanding MS, Neuroscience for Kids, and Someone You Know Has MS. The sites have easy to understand explanations of the disease and symptoms, poetry, forums and chat rooms, and games. Maybe these sites are useful for adults, too.

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Sunday, October 07, 2007

I'm Sleepy

No day is so bad it can't be fixed with a nap. ~ Carrie Snow

There was a time, long ago, when I couldn't sleep. I went for days, sometimes weeks, without a restful night. I had a sleep disorder. My doctor gave me various medications, none of which worked. I learned to relax by meditating, but I had trouble actually sleeping.

Not any more. And I may have found out why my day doesn't start until noon.

As part of the profile on Patients Like Me, we select from a long list of symptoms. One of the choices is 'excessive daytime sleepiness.' I didn't even know that was a symptom, but 607 MSers also listed this as one of theirs. Wow. 607 out of 1492 MSers are sleepy during the day.

All of those years trying to sleep and all I needed was MS. I don't have any problem sleeping any more.

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Friday, October 05, 2007

MSer Stories

MSers are writing their stories and they are willing to share.

Janice Foster retired at 37 due to MS issues. Read her story in Picking Up The Pieces: Rising Above a Loss Again & Again, available at Author House.

Don McNeal, former Miami Dolphins defensive back wrote about maintaining a positive attitude while overcoming MS obstacles. His book Home Team Advantage found at Power Publishing.

Chris M. Tatevosian tells how his "poor me" response to his MS diagnosis cost him a marriage; about bee venom therapy, his faith, and his new wife-to-be. Life Interrupted: It's Not all about Me is available at Book Surge.

Pity-Us-Not MS Support Group Leader Barbara Marchant wrote Dance On about the lives of three very different women with the same MS diagnosis. Dance On can be found on the major online booksellers, with royalties benefitting MSF.

You have a story. Tell it in a book, and use one of the online booksellers to publish it yourself. Other MSers might benefit from reading your story. What fun!

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Monday, October 01, 2007

Disaboom Launch

This is my blog and I like it. I find it fun to research and write, and I plan to continue here.

However, I have found another site and started a blog there, too, called Vicki's MS Path. It's located on Disaboom, a website that hosts a community of bloggers with an interest in disability and it offers more than that, too. It was started by Dr. House -- not the TV one -- with the idea that one blogger may be strong, but many bloggers in the disability community can be powerful and inspiring. There are many disabling conditions, each with its own issues and needs, but many issues are common among them all.

The blogs here cover both individual and common issues.
I really like Disaboom. I did not know about this site until a few weeks ago, but since then I have read many of the blogs. So far they're very good and on a wide range of topics. They also invite reviews of restaurants and hotels by people who know what accessibility really is. I think this is a great idea.

My first post on Vicki's MS Path talks about
children's attitudes toward people with disabilities. The second one is about the language of disability.

There are many MSers on Disaboom as well as bloggers representing other disabling conditions, and other topics such as parenting and caregiving. There are headlines, discussion groups, and classifieds. Disaboom launches today. Go visit and...

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