BONANZA

The news broke and I put it on my list of topics. Today, as I read through my Google Reader choices, 27 out of the 30 items were about the genome breakthrough.

One item was about the Manchester Bike Tour and two told of a quest to rid the world of artificial sweeteners.

But the big news was identifying two genes common to MSers. This discovery makes the cause of MS a "mix of genes, environment, and immunology" and may lead to new treatment options.

Here are some choices of articles from around the world.

Delthia Ricks at Newsday
Science Daily
2GB
China View

Don't expect a new pill tomorrow. These were two major research projects studying a large number of subjects, and it is widely heralded as a key factor, but there is more work to be done. Jonathan Haines, the director of the Center for Human Genetics Research at Vanderbilt University said, "The hope is that new knowledge will lead to the development of more targeted treatments."

To read the study as published in the New England Journal of Medicine, click here.

To read the study report in Nature Genetics, click here.

technorati tags: msresearch, msgenome, msbreakthrough, downthemspath, msgenetics

Leveling the MS Field in Europe

There are so many differences in needs, demands, opportunities, and treatment options among countries in the European Union. The European MS Platform (EMSP) is working to eliminate barriers to improve MSers quality of living.

For example, MSers treated in Poland include 1%, while in Sweden, approximately 50% of MS patients are treated. And while Ireland has 16 neurologists for 7000 MSers, Iceland has 18 neurologists to treat only 330 MSers. Wow.

The EMSP's mission is to exchange and disseminate information relating to multiple sclerosis considering all issues relevant to people affected by MS.

Read the current projects and scheduled events. One event, scheduled in Prague in October, will be hosted by the MS International Federation and the Czech MS Society with the European MS Platform. This is the first time an event of this type will be held in the Czech Republic, giving Czech MSers and medical professionals the opportunity to learn about current and future developments in living with MS.

technorati tags: EuropeanMSPlatform(EMSP), msersinpoland, msersinsweden, msersinireland, msersiniceland, msintheczechrepublic, livingwithms, ms, multiplesclerosis, downthemspath

Resources

Aapo Halko is a Finnish mathematician who was diagnosed with MS as a young man in 1980. He has been collecting links to sites that have information of interest to MSers.

MS Crossroads has been available since 1994. There are MS sites, FDA approved MS drugs, MS in the news, support, tips, research, and more.

technorati tags: ms, multiplesclerosis, downthemspath, msinformation, mslinks, msresources

Here's Another Good One

I found this blog when she left a comment. She found me through Shirl. I found I recognized many of her commenters. But mainly, I enjoyed her posts.

Merelyme writes in a clear, poignant style about her MS experiences, symptoms, living with MS. Multiple Synchronicities & Sclerosis is definitely worth a visit. Be sure to pack a lunch because you will find yourself reading the previous post and the one before that and before that, too.

Click on her MS Diary link in the sidebar categories to read about the bully we all call MS. Keep reading about her diagnosis -- long, but familiar.

Good luck, Merelyme. Please keep writing for those of us who would like to keep reading.

technorati tags: ms, multiplesclerosis, downthemspath, msernetwork, mserblogs

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

The International Federation

Today I am thinking about the MS International Federation (MSIF). Of course we get regular notification of research around the world, but sometimes it's a good idea to visit the old faithful source of information, the MSIF web site.

There is basic information about the disease for the 2,500,000 people affected, particular symptoms and treatments, research and news from around the world. There are links to the MS societies in particular countries, so everyone can find help nearby.

There are stories of MSers and caregivers. The featured MSer for July is Dr. Hitaishi Weekrakoon from Sri Lanka. The 2007 MSer is Ann Langley of Australia, and the 2007 caregiver is Susana Carballido Perdogon of Uruguay. But here's a delightful touch -- you can read diary entries from more than two thousand individual MSers, and you can even find diary contributors from your country or with similar symptoms and choose to correspond through email. In order to search through the diarists, you have to register.

Publications are available for download, including a comprehensive treatment guide. The current issue of MS Focus covers pain, but there are back issues available on other topics.

And because this is a truly international site, readers can change the text language into a choice of nine languages.

technorati tags: msif, msinternationalfederation, mserstories, mspublications, msprofiles

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

MS Video

I found this on My Journey with MS, a blog I wrote about in February last year. She has changed her look since I wrote that first post and included several videos like this one as well as a play list for our listening pleasure. It is definitely worth a visit.

technorati tags: ms, multiplesclerosis, myjourneywithms, msvideo

Goat Serum

It has been over a year since I first read about goat serum used to enhance nerve activity in MS.

For two years the MS Society has been asking for clinical trials to prove safety and efficacy before it is offered to the public. But there are 'roadshows' actively promoting the goat serum drug Aimspro.

Now there is concern that UK MSers are being seduced into buying the expensive treatment that has not been proven to be effective in treating MS. Daval, maker of Aimspro, is under investigation by the Medicines and Healthcare Products Regulatory Agency.

It all sounds pretty sleezy . . but, wait. There is an update. Two clinical trials are scheduled to start in October and a third is awaiting approval. They are targeting patients who have already proved resistant to current treatments. Maybe this goat serum is not so bad after all.

Research and Development are now the focus of Daval International. We'll, know more when the tests have been completed, but it sounds promising.

technorati tags: aimspro, goatserum, ms, multiplesclerosis, msclinicaltrials, davalinternational, unprovendrug,

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

What's Your Sign?

Here is a different type of research -- the objective was to find a relationship between the month of birth and the risk of MS, with the added question of genetic susceptibility in the northern hemisphere.

This interesting study was done by the Department of Biostatistics at the University of Michigan in Ann Arbor, Michigan. It was based on thousands of death certificates in the northern hemisphere, the very north northern hemisphere: Canada, Great Britain, Sweden, Denmark. The control group was the general population and unaffected siblings (remember the genetic twist).

Did they find anything? Why, yes, they did.

The month of birth and risk of MS are associated, especially in families. Therefore, there seems to be a relationship between genes and environment related to climate, perhaps shortly after or even before birth.

Specifically, there were fewer MS births in November (that would be Scorpio & Sagittarius), and more in May (Taurus & Gemini). This pattern was found in all countries studied. The most significant substantiation was in Scotland, where MS is most prevalent.

Interesting. I wonder, then, since this pattern was found in the far north, if it is also true for the far south? And what about the rest of the world? Are there more MSers born in affected families in May in Texas? And what is the pattern in Ecuador? Hmmm.

technorati tags: ms, multiplesclerosis, msinfamilies, msandmonthofbirth, canadams, greatbritainms, scotlandms, swedenms, denmarkms, msandclimate, downthemspath

Chore Assistants

The National MS Society reminds us that MS stops people from moving. We MSers are quite aware of that, but we also know that different MSers have different movement abilities.

The MS Association of King County has a program that helps MSers whose movement restrictions impact their daily activities. This is an idea that should spread around the country! MSAKC has a network of "chore assistants" that help each person according to individual needs.

Those needs vary from simple errands, like shopping or yard work, to housework, or simply companionship, like reading aloud or playing cards. How nice.

Sometimes, I would like to rearrange items on a shelf or organize a closet, but I cannot do it alone. The MSAKC program allows people to stay at home while remaining independent.

technorati tags: ms, multiplesclerosis, choreassistants, nmss, msersremaingindependent, downthemspath

Voting with MS

We are all allowed to vote -- all of us, even if we have accessibility issues. We can remove ourselves from the voting pool (e.g., felony conviction), and we can choose not to vote (which is a vote of apathy), but we have the right to vote.

However, there are often obstacles for those of us living with a disability.

The Voting Rights Working Group, part of the ADA/Civil Rights Subcommittee of the National Council for Independent Living wants to know about these obstacles so they can be corrected.

Take a minute -- it really is only a minute or two -- to complete a survey about voting in your area.

I vote by mail and don't usually have any problems, but I completed this short survey. If the problems are known now, maybe they will be corrected before the next major election. Take action.

technorati tags: voting, nationalcouncilforindependentliving, votingrights, accessiblevoting,

MS and Yoga and Garry, Too

By now we know that exercise in general, resistant and from a chair, and specifically yoga are important to the MSer.

Garry, who studied yoga in India and who doubles as my caregiver, found a yoga program specifically for MSers. His Thursday post is definitely worth checking out.

technorati tags: ms, multiplesclerosis, exercise, yoga, garrysblog, downthemspath

Voting for MS

The presidential election is more than a year away, but the race for the nomination is in full force.

When Mitt Romney entered the race, he did us a favor. Ann Romney was diagnosed with MS nine years ago. Regardless of the voting results, Ann Romney benefits MS by increasing awareness. She explains to the press how she is handling the stress of the campaign. Read an article covering an interview here.

She has been through it before, though admittedly not on the same scale. Here is an interview when Mitt was governor-elect of Massachusetts, and Ann had just finished living through a political campagn.

Ann Romney is illustrating to the country that MS does not mean life is over. It is different and requires some accommodations now and again, but life goes on. FDR was the President as a disabled person. Surely, Ann Romney can be the First Lady as an MSer -- or at least the wife of a presidential candidate.

Thank you for reminding us that life goes on, even for the MSer.

technorati tags: annromney, mittromney, presidentialcandidate, managingms, multiplesclerosis, ms, mslifestyle

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