Sunday, March 18, 2012

Vicki's MS Gazette Debuts

Welcome to MS Education & Awareness Month. There is a new addition to my sidebar - Vicki's MS Gazette.

There is a headline with the beginning of an article, just enough to let you decide if you want to read this particular article. If the first one doesn't excite you, scroll down. You will see other headlines over short blurbs. Like one? Click to see the full text.

Vicki's MS Gazette collects news and stories from around all edges of the available social media.Enjoy.

Wednesday, November 09, 2011

Multiple Sclerosis Central asked me to write a series of articles describing progressive types of MS. I thought it was a good idea because although there was a significant amount of literature on MS, very little of it is about progressive types. Here are the articles that were written and published in the spring of 2009. Please understand some information may have been updated since these were published. 

MS Progressive Types: What Type Are You?
Rose is a rose is a rose." ~ Gertrude Stein A rose is a rose, but can we say MS is MS? After all, MS affects the autoimmune central nervous system of every person who has MS. But after that it gets a bit murky. Just as a rose is identified by characteristics such as color, size and fragrance, so is each person's MS symptoms unique based on. . .

MS Progressive Types: Secondary Progressive
Secondary Progressive MS is the advanced course of Relapsing/Remitting MS. I recently talked about the different types of MS. Now I am looking at the characteristics of Progressive MS. As this series continues, I will discuss research and clinical trials, medications, "a day in the life," and other topics relating to the progressive types of...
read more

 MS Progressive Types: Primary Progressive and Progressive Relapsing
Let's continue looking at characteristics of Progressive MS. I already talked about the different types of MS and focused specifically on Secondary Progressive. As this series continues, I will discuss research and clinical trials, medications, "a day in the life," and other topics relating to the progressive types of MS. Today the focus is on..

MS Progressive Types: Living with Progressive MS
 Each of us has our own way of dealing with bad news, and an MS diagnosis is bad news. When someone is newly diagnosed, it is pretty scary. Some people bend over backwards to learn everything they can. Others just live with it awhile, hoping for the best. We all learn as we go along because living with MS is such an ongoing challenge. Living with..

MS Progressive Types: Treatments
The MS community was thrilled in 1993 when the FDA announced approval of the first drug that addressed the disease instead of just symptoms. Approval of Interferon B opened up a whole new world of possibilities for MSers. In the next few years, a family of drugs -- Avonex®, Betaseron®, Copoxane® -- and later, a fourth option --..

MS Progressive Types: Progressive Treatment Trials

" What is research but a blind date with knowledge?"   ~ Will Harvey At least 60% of all MSers have Relapsing/Remitting MS (RRMS). It follows that most clinical trials apply to RRMS as well. The goal of these clinical trials is to slow or prevent slipping into the chasm known as Chronic Progressive MS. There is less known and..
 MS Progressive Types: The Human Side
 With Progressive MS, there is not a moment free from the thought and feel of MS. Pretty scary? This series of articles started with an explanation of the different types of MS and then continued by expanding on Progressive MS. Some of the information paints a bleak picture, but let me add a personal touch that should make it less...

 MS Progressive Types: Frequently Asked Questions
This series of articles about Progressive MS has a lot of information, and not all of it is easy to read or understand. Perhaps a good way to review the subject is to cover some of the frequently asked questions. How do I know if my MS is a Progressive type?MS may start with an attack followed by a continual increase in the symptom severity,..

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..

Please read the comments for a little more information. Articles like this and blogs about MS and by MSers are found on  Multiple Sclerosis Central. If you have MS, or an interest in MS, feel free to join and participate.

Tuesday, October 25, 2011

Create a cloud

Take a look at the cloud I created based on topics in Down the MS Path. This is interactive, so do not hesitate to click on words that interest you.

This cloud was created using Infomous, currently a beta site.

Monday, April 25, 2011

Voting for Chelsea's Hope

My friend told me about a contest that he is very interested in. As luck would have it, Michael's choice has and has made it to the finals. The winner gets a NASCAR car decorated to highlight their cause -- helping increase awareness.

Michael is supporting Chelsea's Hope, a non-profit for Lafora Children Research Fund. Please vote for Chelsea's Hope.

Voting is simple. Just CLICK HERE. Come back and vote every day until May. Tell your friends. This is a good thing, and it is easy.

To learn more about Chelsea's Hope, CLICK HERE.

To read Michael's post, click on The power of the internet to do good. More about Chelsea's Hope.

To see all of the finalists, just click here.

And just in case you missed it,
please vote for Chelsea's Hope. Just CLICK HERE. Come back and vote every day until May. Tell your friends. This is a good thing, and it is easy.

Thank you.

Tuesday, April 19, 2011

Paralympics, Sports and MS

Do you know what my favorite part of the game is? The opportunity to play. ~Mike Singletary

Exercise is recommended for MSers to help maintain their abilities and general health. However, most MSers have to limit their workouts to fit their abilities. You didn’t think your MS diagnosis meant the end of your active sports life, did you? Here is the story of others who may have thought so, but learned life can still be active and even thrilling.

Some WWII veterans thought their lives were effectively over because of injuries that occurred during the war, but their government would not let them give up. They had been trained, they were strong, and there was so much life left to live. Let’s see what they did to improve their quality of life and to make life worth living.

The British government, after World War II, asked Dr. Ludwig Guttmann to work with spinal injuries in war veterans. Guttmann founded the Stoke Mandeville Hospital. To further veteran's therapy, the doctor used sport for rehabilitation, and in 1948 their therapy turned to sport which turned to competitive games. At first there were 14 men and two women competing annually in the game of archery.

Over the years, there were changes to these games as they expanded offering opportunities to many people with disabilities. They were demonstrating to the world that having a disability does not necessarily put an end to their productive life.

Following are some highlights of Dr. Guttmann’s sports therapy and how it evolved:

  • Injured Dutch servicemen joined in the games by 1952, making this activity truly an international competition for the first time.
  • By 1960, these games had been opened to athletes with disabilities who were not military.
  • That year the competition was hosted in Rome following the Olympics, creating the first Paralympic games.
  • Rome hosted the Paralympics after the Olympics; however, those facilities were not wheelchair accessible (surprise!) and military personnel assisted athletes between venues.
  • In 1960 there were 400 athletes competing from 23 countries.
  • In 1976 athletes, were no longer limited to wheelchairs.
  • Improvements were made in designing and constructing facilities for wheelchairs as well as more types of disabilities.
  • By 2004, there were almost 4,000 athletes and by that time there were even more than 3,000 media representatives, meaning the world was taking interest.
  • Beijing hosted over 3,900 athletes from 148 countries
  • In 2010, Summer Paralympics offered 420 events in 20 sports. Winter Olympics had 64 events in 5 sports.

“Para” represented paraplegic at first, but as athletes with more and different disabilities were included, the meaning of the prefix was changed to the Greek “parallel” for “side-by-side.” By then it represented the fact that Paralympics could be considered as equal to the Olympics. These two sports events developed and were scheduled “side by side,” Paralympics after the Olympics, often in the same venue.

Paralympic games, like the Olympics, are now a multi-sport event comprised of international multi-sport events including world-class athletes with disabilities.

Paralympians have been searching for funding equal to Olympians, as well as opening the games to more sports such as track and field. There are even talks about Paralympians once again being eligible to try out and participate in the Olympics, athletes with disabilities competing head-to-head against athletes with no disabilities - athlete vs. athlete and equal opportunity.

The games began as rehabilitation for athletes with spinal cord injuries, soon adding mobility disabilities, amputations, blindness, and Cerebral Palsy. There was always a category called others so athletes with other disabilities, such as multiple sclerosis, can also participate. Today, people with all types of disabilities either play, or are interested in playing, in the Paralympic games. In fact, MSers have participated and with an admirable degree of success.

Of course I do not know about all of the MS Paralympians, but I do know some. In 2008, equestrian team Great Britain at the Paralympics in Beijing included MSers, both Simon Laurens and Anne Durham. Simon Laurens is in the top 10% of the 100 paralympic riders in the UK. Great Britain has acquired more medals for Paralympic dressage in the last 25 years than any other sport. Let me repeat that: Great Britain has acquired more medals for Paralympic dressage in the last 25 years than any other sport.

One rider is a team member for the fifth time.
Anne Dunham, who is in the most disabled category of Para Dressage riders, has won a team gold as well as an individual bronze. In this category, medals recognize both world class athletes and horses.

Equestrian events are perfect for MSers since hippotherapy is such a good therapy for us. However, there are so many more sports that work for us, too.

Dr. Guttmann’s initial idea was to use sports as a rehabilitation tool. Sports are a way to keep in shape, to feel better about ourselves, and to remind us we are still capable of doing all kinds of things. We are still capable of being thrilled.

Notes and Links:
Wikipedia on Paralympics
History of Paralympic Games

Sunday, August 22, 2010

Quality of Life for Children

Here is my contribution last week about Pediatric MS in Children with MS are subject to a Quality of Life that plummets.

This is a section of Health Central.

Pediatric MS: Quality of Life?

Young people with multiple sclerosis still make up a small minority of those with the disease, and it has been only recently that Pediatric MS has even been recognized. Just as with MS when it was first recognized, diagnostic criteria were unclear and treatments were on a trial-and-error basis. There was not a great deal of awareness of ... Read more

Sunday, August 15, 2010

Pediatric MS - MS-like Symptoms

Here is my contribution to the articles written last week about Pediatric MS in Children and young adults may exhibit MS-like symptoms that may never develop into MS.

This is a section of Health Central.

Pediatric MS: Is it MS?

When a child exhibits MS-like symptoms, it probably means he or she has a problem with myelin. Whether the diagnosis turns out to be MS or not depends on the condition and the lesions. Kids Get MS, Too, by Jayne Ness MD-PhD FAAP, FAAN, tells the story of children 18 and under who have demyelinating conditions. It was published by the ... Read moreChevron

Pediatric MS Centers of Excellence - Read moreChevron

Pediatric MS: Resources for Kids, Teens, and Parents - Read moreChevron

Thursday, August 05, 2010

Introduction to Pediatric Multiple Sclerosis

Here is the introduction for articles written this month about Pediatric MS in For years MS was considered a disease of young adults. More research has found there are older people being diagnosed, but there are also teens, children, very young children — and even babies!

Pediatric MS is recognized by the medical community, but more education and more awareness is needed. MS is not affecting just young adults. MS possibly affects everyone. This is a section of Health Central.

Pediatric MS - We Did Not Know

Education about Pediatric MS is on the rise, and more children under 18 are being diagnosed with MS. With all of the new information and education, there is still a need for awareness that children have MS, too. Children are often misdiagnosed or not diagnosed at all. For so long, MS was misunderstood. In the 1950's, when I was a child, it was... Read moreChevron