Friday, August 31, 2007

Balancing Act

MS in Balance offers a new series of webevents this fall.

It is often difficult to find a balance in your professional and personal lives, your family and friends time, and even between your children. Add MS and the balance is suddenly askew.

MS in Balance, sponsored by Rebif, presents webevents designed to help

And here's a prize -- the first 20 people to log in win Teri Garr's Speedbumps: Flooring it Through Hollywood.

To enjoy previous webevents, visit the MS in Balance archives.

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Tuesday, August 28, 2007

Mind Mapping MS

Here is everything you ever wanted to know about MS. Well, maybe not everything -- no cure, but almost everything else. The detailed, complex information of a wiki presented in a structured, easy-to-read format inspired by mind mapping.

Check out the MS
Wikimindmap. The original structure is built around multiple sclerosis. Click on any of the branch topic green buttons to restructure a map based on the chosen topic. Click on the summary branch topic + buttons to get a list of topics available for restructuring new maps, providing further levels of information.

To display Wikipedia details, click the topic text. Wow. Information and relationships.

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Thursday, August 23, 2007

Surfing Through MS Blogs

Here are some MSer sites I have collected along the way. Visit and enjoy --

The other day I ran across a site that is absolutely delightful. This would be Bubbie's Blog. She was dubbed Bubbie by her granddaughter, for reasons only she understands. Bubbie is an easy read. Get ready to smile and maybe even laugh out loud, and share her thoughts about her personal experience.

Living Life as a Snowflake is written by an MSer mom whose son compared MS with a snowflake: "...all different, no two are the same and...all special in (her) own way." What a lovely description. She is relatively new to blogging and I enjoyed reading her posts.

I am often reminded how lucky I was that my MS episodes were almost mild when my boys were young. Here is a young mother of two young children who was diagnosed ten years ago. She writes about Multiple Sclerosis -- Real life stories & Issues. It's worth a visit.

And here is a new site written by a physician. His idea is to provide easy-to-understand information about diseases, something not found elsewhere. Healogica, subtitled Making Sense of Your Health, featured an MS article focusing on genetics.

I found this one when I was trying to learn about trigeminal neuralgia (TN). It is simply titled Multiple Sclerosis. This site is heavy on news and research, presented in generally short posts.

Here is a site where woman writes about her husband's experience with low dose naltrexone (LDN) used to treat his MS. LDN is FDA-approved for addictions, but there is evidence it is effective with autoimmune and neurodegenerative disorders. She offers several links to other sites that discuss LDN and its relationship with MS.

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Tuesday, August 21, 2007

Research Goes On

Here are two recent studies:

Study Objective: Find relationship between disease activity and quality of life, and the impact of natalizumab
They found MS impairs the quality of life. Surprise, surprise. Further, natalizumab improves that impaired quality of life. So, the medication works, at least to some degree.

The study was made for relapsing-remitting MS. The drug, natalizumab, is also known as Tysabri or Antegren. Now, we know some of the history of Tysabri. It was originally FDA approved in 2004, then removed in 2005 because it could lead to a viral infection of the brain. Amid public outcry, Tysabri was returned to the market, but only with a stringent Risk Management Plan.

Study Objective: Discover tolerance of DNA Vaccine in MSers
They found the vaccine is safe and well tolerated.

The study was made with relapsing-remitting and secondary progressive MSers. Participants were not taking any disease-modifying drugs, and they had a relapse or an identifiable progression in the previous two years.

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Sunday, August 19, 2007

Stem Cells

The stem cell research legislation Congress manages to pass is consistently vetoed. We have to continue to tell our representatives to continue trying. Don't we?

At least one group
thinks the new DNA discovery eliminates any need for pursuing the 'life-destroying" embryonic stem cell research.

I say, "Not so fast." This research find may lead to treatments or possibly even a cure; but then again, it may not. I believe it will, but we all know how much time it takes for research to actually become a valid FDA-approved drug, and there is always the chance that a safe, effective treatment will elude the researchers. And, as experience has taught us, maybe the new treatment won't work equally for everyone.

Why cut off a potential path before we know if it does or does not work? Let's keep our options open until we have an MS-free world.

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Monday, August 13, 2007

MS in Finland

Aapo Halko, a Finnish mathemetician, was diagnosed in 1980. He has created a magnificent directory of everything MS. MS Crossroads includes links and more links.

If you are looking for something you have not been able to find, look here. It's hard for me to imagine he left out anything. He links to MS sites, medical sites, MS news, support, tips, drugs, software for the disabled, research, speculation, and more. He links to pictures of him using special equipment, discussion boards, lecture texts, and even more.

I haven't been able to try all of the links, but here's one good one, Quackwatch. Their mission is to combat health-related fraud with help from a global volunteer network. A link to The Whole Brain shows a scan of a brain with MS lesions.

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Saturday, August 11, 2007

When You Can't Think Straight

I depend on my mind. Is there anyone who doesn't? But MS threatens to take that, too.

My father, an Air Force pilot with a disciplined mind, was not always lucid after a long fight with Parkinson's. My mother has suffered several strokes and gets frustrated when she doesn't understand something that once was familiar. She is even more frustrated when she knows she can do something and everyone around her knows she can't. There are many reasons we fail to retain our faculties, and MS is as cruel as any of them. So what can an MSer do to reduce the encroaching threat of cognitive difficulties?

Peg Shepherd, RN, MSer, writes a blog for WebMD called Living with Multiple Sclerosis. She tells us about 50% of MSers will experience some level of cognitive impairment. She continues on this topic and covers coping strategies along with a post on cognitive testing.

My doctor told me to play word games -- crosswords and trivia -- to keep my brain active and ward off the mind-stealing Monster. Now Peg Shepherd echoes that recommendation. Anyone want to play?

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Wednesday, August 08, 2007

It's Getting Hot Down Here

When I was first diagnosed with MS, I was told to watch out for the hot Texas summers. I had lived in Texas for 15 years, and therefore, endured 15 Texas summers. No big deal.

Wrong. Either the summers are getting hotter or I am subject to the power of suggestion. Being outside for just a short time, I am completely wilted. Bummer.

I know this is not exclusive to me. I have read several MSer blog posts about this very topic. But we have been really lucky this year. Last year there were 43 days with measured temperatures of 100+. So far this year, there have been 0 days beyond 99, but the forecast threatens scorching heat by Saturday.

It is time to review cooling techniques. Julie Stachowiak talks about heat intolerance and then gives hints on cooling techniques and products. This is a good reminder in these hot, hot days.

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Saturday, August 04, 2007

Votes for MS?

The Albert and Mary Lasker Foundation has sent a questionnaire to Congress to ask how our senators and representatives stand on health issues. To find out where your elected officials stand, check Where Does Congress Stand?

In the event your senators, like both of my Texan senators, have not yet completed the questionnaire, you can still check on their voting habits. I thought it was interesting to see who missed votes, and how many they missed.

For specific roll call votes, try the Senate Reference or the Congress Votes Data Base.

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