Monday, November 16, 2009

Research Studies

Want to volunteer for a medical research study?

UT Soutwestern sent a press release about ResearchMatch where volunteers can be matched — online — to a scientific research project, or clinical trial, for which they might qualify. The National Institute of Health gave UT Southwestern a grant to help quickly move laboratory discoveries into actual therapies.

This new allows the medical community "to cast a wider net into a deeper pool of potential subjects.” Both healthy people and those with illnesses and conditions can take advantage of this opportunity!

Saturday, November 14, 2009

MS and Evils

One of my favorite online friends Michael B. Gerber doesn't write in his blog about MS, he writes about life. His happens to be a life with MS, so MS sneaks in there now and again. You may notice his blog "Perspective Is Everything" in my "Favorite MSer Sites" list.

Last week Michael sent me a story about medication and side effects. He asked if I had something to add, but it was good, as his writing is. I did, however, manage to throw in a word or two and make a change here or there. Read our post here: The Lesser of Two Evils

His is a blog certainly worth reading. While you're there, look around. Enjoy.

Friday, November 06, 2009

Pain and MS, Yes, It Hurts

I wrote a series of articles for Health Central on Pain and MS, covering the types of pain and treatments. These are general, just to give you an idea. I am sure there are some pains as well as some treatments that have been left out. Please let me know! The best idea is to talk with your doctor about any pain and how to treat it. Here is the article series —

Pain and MS

Pain and MS: Neuropathic Pain

Friday, October 16, 2009

Biking for MS

The National MS Society sponsors 100 bike events to raise funds for MS. All of the participating bikers have one destination — A World Free from MS! Sounds like a place I would like to go there one day. How about you?


My friend, my college roommate many years ago, has a friend who was ready to bike, so she dedicated her ride to me. We met only online. Georgia sent these fabulous pictures of her with her New Orleans team on their ride. Unfortuneately, they were unable to complete the ride as scheduled because of Louisiana's famous weather. Too bad.

They had fun and MS appreciates their contribution. Thanks, Georgia Kobos Thomas!

Wednesday, September 16, 2009

Health Central

Health Central is a network that provides information about 40 or more specific diseases and conditions. The information includes blogs and personal stories by people actually living with or touched by those conditions.I write for the multiple sclerosis section.

Each condition also has a section for questions -- any question -- answered by others who may have experience with the question topic.

Browse the site, share your stories or ask a question. I'll see you there!

Thursday, September 10, 2009

MS Survey

Do you want a voice in MS research? Here's a chance.

Lisa Emrich of Brass and Ivory posted this yesterday and asked that we copy and post it. The link to the survey is included. It took me less than 10 minutes. There was no space specifically designated for comments, but I put them in the spaces provided for "other." Will they be read? I hope so.

Here is Lisa's post:

Share Your Thoughts on MS and Genetic Research!!

HereEarlier today, I was contacted by Virginia Hughes who is a freelance science writer with a special interest in genomics and disease, specifically autism and schizophrenia.

She is participating on an ethics panel at the 2009 Cold Spring Harbor Laboratory (CSHL) conference on Personal Genomes. Virginia says that "they've ask me to comment on what I think is the current and future appetite for genetic testing among people who belong to various disorder advocacy organizations, such an MS organizations."

She is looking for solid numbers to include in her presentation, so created a survey about our thoughts on Multiple Sclerosis, Genomics, and Genetic Research.

The survey is simple - only eight short questions. Virginia would appreciate receiving at least one hundred responses so that the results might show some meaningful trends. Perhaps we could spread the word and get even more than that.

Please complete the survey and be sure to mention the MS blogs and groups where you often read MS-related information.

Thank you,

Lisa Emrich

Feel free to copy/paste this post in its entirety and post it on your blog and at your favorite MS forums, message boards, and social networks.

Tuesday, September 08, 2009

Living with MS

I got this from Mike Deegan on Facebook. It takes only one minute and is a good illustration of life with MS.

Saturday, August 01, 2009

I Am So Lucky

Merely Me asks a question of the week on her MS site located on Health Central. This week the question is What are you grateful for today? She always gets interesting answers, each totally different than the one before. This is worth reading. Here is my answer to this week's question:


This is a great question because it makes us think beyond our usual inconveniences and pain. What a good topic for those of us who live every day with a chronic condition; actually gratitude is a good thinking mode for all of us.

At one time (when I was a viewer), Oprah suggested everyone keep a gratitude journal. We were to list three things we are grateful for every day. Many of my items were repeats day after day.

There are only so many big things, and then circumstances took away the one about the US not involved in active war, so there are fewer big things. Then I started thinking of small things. I am still thankful for big things like health, family and friends, but now I find pleasure in successfully completing a tasty dinner.

Each day when I smile or laugh for any reason, I am grateful. When I hear my son (either or both) is happy, or talk with a giggling grandchild, I am grateful. When my foot is in the right position, I am grateful. There are so many things, some relating to my MS and some not; there are tiny miracles throughout the day and I know I am lucky.

I feel grateful that I am so lucky.

Thursday, July 23, 2009

Anthony's Science Fair Survey for MS

Anthony's dad was diagnosed with MS about seven years ago. It has "drastically changed" his entire family's lives. We all know that story.

Anthony, high school student in Michigan, is participating in his high school science fair. For his project, he has a theory concerning ms and geography. In order to explore it, he put together a short survey fo MSers to answer. It is five questions and takes less than one minute.

Please take Anthony's survey.

If you would like to leave a comment for Anthony, here is his original request on Health Central.

Saturday, July 18, 2009

MS Progressive Types: Happiness

This s the last artical in the series on Progressive MS for the MS Section of Health Central. This one summarizes the topic with a question-answer format. There is one left. The FAQ article was first published June 30. Here it is --

MS Progressive Types:
Living with Happiness

MS was never part of the my life plan. Like most, my initial MS diagnosis was a long and bumpy road. When my MS became progressive, the road changed to a detour in uncharted territory with no end.

How can I face such a bleak future?

It seems to me that I have a choice between two basic options:
  • I can live with Progressive MS and be sad, grieving for the life that is not to be. I can be angry because it's just not fair. With every new symptom, every hint of a potential new symptom, and each function that is harder or slower or just not there any more, I can become more grumpy and cranky. Or,
  • I can live with Progressive MS and come to peace with it. I can learn to accept each new symptom and delight in things I am still able to do. I can find new ways to enjoy things I have always enjoyed and even find new things to appreciate. I can choose to make an effort to maintain a positive attitude and be as happy as I can be.
Notice that both of these choices still include Progressive MS. I do not like it, but I cannot eliminate it, and I can still choose to be happy.