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.

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.

technorati tags: universityofmichigan, msresearch, mssubtypes, downthemspath

A New Technique?

The MRI has been the chosen method for diagnosing and then tracking the progress of MS. Now there may be a less expensive technique used as a marker, and it may be more detailed than the MRI in some instances. This technique may be new for MS, but it is likely you have been tested with it already. I know I have!

Neurologists from the University of Buffalo have found that optical coherence tomography (OCT) is useful in MS, especially optic neuropathy which is the first sign of MS for 20 - 25% of MSers. This is the same test that has been used for glaucoma. This test works because the retina has no myelin.

Read more about applying this procedure to MS here.

Added March 11: I found this interesting story on Being Ammey. Her diagnosis originated in an eye test.

technorati tags: ms, multiplesclerosis, glaucoma, downthemspath

Are You on Medicare?

If you are not on Medicare now, there is a good chance you will be sometime in the future, so you might want to pay attention.

The American Association of Retired Persons (AARP) is a membership organization leading positive social change and delivering value to people 50 and over through information, advocacy and service. AARP has a project that supports legislation to strengthen Medicare.

Medicare premiums are rising to the point that some doctors are likely to limit the number of Medicare patients. AARP would like to preserve access to doctors and prevent premiums from skyrocketing. Prescription drugs are often quite expensive, and lower income citizens need help to pay for them.

With this in mind, AARP is asking Congress to pass legislation to ensure Medicare is accessible and affordable. Support this project and sign the petition.

technorati tags: AARP, Medicare, Medicarepetition, Vickisblog

International Day of Disabled Persons

Today is our day.

The International Day of Disabled Persons, established by the World Programme of Action concerning Disabled Persons increases awareness of disability issues and promotes integration, equal opportunity and participation of disabled persons in society. Sounds good to me.

Congress acknowledged that society's accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.
William Joseph Brennan, Jr. (1906 - 1997), Associate Justice of the Supreme Court

The theme for 2007 is "Decent work for persons with disabilities," focusing on the problem of denial of opportunities to work in an accessible and accepting environment.

Read about the themes and observances in previous years.

technorati tags: internationaldayofdisabledpersons, jobopportunitiesfordisabled, williamjosephbrennanjr, downthemspath

Ain't Technology Grand?

I have to agree. For those of us who live with disabilities, technology has helped level the playing field, at least where computers are concerned.

Apple tells us they have been working for accessibility since 1985. They describe how they have addressed vision, hearing, physical/motor skills and language. Just last year they partnered with the Blind Access Journal to prepare a presentation about Macintosh accessibility.

There is also an accessibility overview for using PC's. Registration is required for some content and reports.

Then there's a site that is set up specifically to guide MSers in technology use, My MS My Way. My MS My Way is a collaborative, consisting of the National MS Society, Bayer HealthCare Pharmaceuticals, and Microsoft aided by a committee of MSers.

The collaborative commissioned research shows that technology is vital for many MSers managing daily life with the disease, however, relatively few take advantage of the technology that is available. MSers say they do not use the technology because they need better information, and most cite cost as the culprit. Read the research report.

This One Is Fun

Postcards of my Life is described as "Life with MS thru the eyes of a postcard" and the description fits.

Each post is a picture, photo, drawing, background, an image. The text sometimes states a fact, projects a feeling, conveys a day in the MS life.

This blog is nicely done and worth a visit. Enjoy.

technorati tags: ms, multiplesclerosis, lifewithms, downthemspath

Health U

Health U offers a course of four lectures telling about MS and its course, treatments and coping, presented by experts and MSers themselves.

Health U is supported by Healthology, an online medical content producer. They have produced more video programs than any other online medical site. Besides MS, Health U has courses on many other conditions, including hair loss, breast cancer, AIDS, and sleep disorders.

The courses are free. All it takes is registration.

technorati tags: healthu, healthology, ms, multiplesclerosis, medicalvideos, downthemspath

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...

technorati tags: downthemspath, disaboom, disability, vickismspath

Down the MS Path

There are several paths one can take, but not every path is open to you.
Claire Bloom

How do I know if a particular path is open to me? I am on my current path, which I did not choose, and I don't see another path to travel instead. Hmmm

Do not follow where the path may lead -- go instead where there is no path and leave a trail.
Ralph Waldo Emerson

Now, I like that idea. If my path becomes a bit rocky and rough, I can blaze my own trail. It seems I might have some control here after all. And as I roll down my path, I am reminded not to dwell on the negative.

What lies behind us and what lies before us are tiny matters compared to what lies within us.
Ralph Waldo Emerson

technorati tags: chosenpath, positiveattitude, downthemspath

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.

technorati tags: ms, multiplesclerosis, mserblogs, naltrexone, ldn, downthemspath

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.

technorati tags: msdnavaccine, stemcellresearch, ms, multiplesclerosis, downthemspath

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?

technorati tags: parkinson's, cognitivedifficulties, livingwithms, wordgames, downthemspath

Clarify the ADA

Today is an anniversary - seventeen years ago, Congress passed the Americans with Disabilities Act (ADA), and President George Bush signed the bill on July 26, 1990.

Today, Rep. Hoyer from Maryland and Rep. Sensenbrenner from Wisconsin are introducing the ADA Restoration Act of 2007 to clarify and strengthen legislation to eliminate discrimination of the disabled.

Following the examples set by African Americans in the Civil Rights era and by women in the Women's Movement, disabled people began working to correct problems after years of discrimination and devaluation. Discrimination in this case introduced new challenges and required opportunities for education, employment and even independent living.

The law was written very broadly and does not provide enough protection for individuals with disabilities. MSers who manage their symptoms too well may not appear to be disabled enough to be covered by the ADA. In recent years, courts have been quick to side with employers; in effect saying people are not able to do a job but not disabled enough to qualify for ADA protection.

Urge your representative to co-sponsor and support this bill. If you do not know, click here to identify your representative and send an email that may include a personal story.

technorati tags: downthemspath, ada, legislature, disabilities, congress

Sometimes You Just Don't See It

I have secondary progressive MS and the progression is slow. Some friends and family tell me they don't see much difference in my ability over the last several years. Maybe they are being kind and don't want to tell me if I look pathetic. Maybe the changes I feel are more the effort that goes into the daily routine. They don't see what I see.

Conversely, I don't see what they see.

I was reading Julie Stachwiak's excellent MS blog on About.com, and she suggests we MSers recruit our friends to tell us about symptoms when we may be unaware. Her examples include different size pupils and fuzzy thinking.

I can see how I might not realize when I repeat myself, but it never occurred to me to watch my pupils. When my left pupil is larger than the right one, my vision is probably not good enough to notice. I would never know, but my doctor might be interested.

Okay, friends, look me over. Do you see anything that looks a bit strange? Now that could be a dangerous question.

technorati tags: ms, multipleclerosis, mssymptoms, downthemspath

Coping with MS

How well you cope with your MS may be directly related to the information you received when you were first diagnosed.

Several Norwegian agencies, including the Competence Centre, the Centre for Movement Disorders, and the Centre for Behavioural Research joined together for a research project. They studied the relationship between information garnered in the early stages and the coping style used.

The result was that better information led to better coping with and living with MS. That made sense to me, but the really interesting thing was some of the data used to reach that conclusion. Almost half of the people studied were dissatisfied or very dissatisfied with the information they were given at diagnosis.

People who were satisfied were less likely to deny their disease and more likely to seek more information. Hmmm. The better the information they get, the more they try to find out.

technorati tags: ms, multiplesclerosis, copingwithms, msresearchinnorway

The Beginning of Wheeling

King Phillip II of Spain (1527-1598) was also King of Portugal, Naples, Sicily, Chile, England (as King-consort of Queen Mary I), Sovereign of the Netherlands, and was appointed by the Pope as King of Ireland. He led Spain to its height of power.

As busy as King Phillip II of Spain was, he still inspired the invention of the first recognizable wheelchair. A 1595 drawing showed the king in his tall wheeled chair with arm and foot rests. It wasn't until the next century when a German built a chair with a hand wheel; then another century when an Englishman built a chair propelled by pushing the wheels.

That is progress. Wheeling then and now is much more manageable than the Greeks' wheeled bed in 530 BC, and the Chinese attempt in 525 AD with a chair with wheels. Even the electric scooter, invented in 1924, has "come a long way."

As I sit in my electric scooter, I'm wondering what wheelers will be using in another hundred years.

technorati tags: downthemspath, kingphillip, wheelchair, history

Carbon Monoxide -- Good or Bad?

Carbon monoxide is an odorless, toxic gas, and we should have a carbon monoxide detector next to our smoke detector to warn us when our lives are in danger. Carbon monoxide is poison, and we should avoid it.

But wait. What about carbon monoxide with MS?

Researchers in Portugal have found that administering carbon monoxide has a postive effect on MS -- in mice. It's not really carbon monoxide, but a protein, and the research has been limited to mice, but the researchers think administering carbon monoxide to MSers might be a useful therapy.

Of course, more research is required, and then clinical trials must be made. For now, file this with bee sting therapy and parasitic infections. Oh, and don't throw away your carbon monoxide detector.

technorati tags: ms, multiplesclerosis, msresearch, msandcarbonmonoxide, ho-1protein, downthemspath

What can a grandchild teach me?

I cannot walk. I spend my day in the chair of my Amigo scooter. When the grandkids were very young, each one of them, in their own time and in their own way, asked me why I couldn't walk. I did my best to explain to them about my MS.

Taylor, nearly a toddler herself, was the first to offer to teach me to walk. She was so sure she could teach me, because it really isn't too difficult. She learned to walk, so surely I could learn, too. She wasn't one to give up, and we went through that scenario several times.

Michael was the next to offer. He added a couple of extras to the offer. First, he wanted me to lean on him for my first few steps, and don't worry -- he would not let go. After I declined that offer, he pulled out one of my canes -- unused for years -- and tried to explain to me that the cane would keep me from falling.

No, kids, it's not that I haven't learned how to walk, but that I haven't learned how to walk without using my legs. What I learned, however, is how very sweet and caring you each can be. I will always remember your loving concern, and I thank you very much.

technorati tags: ms, downthemspath, multiplesclerosis, nonambulatory, grandchildren, teachtowalk