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.

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. . .

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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...

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 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..

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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..

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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 --..

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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..

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 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...

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 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,..

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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..

read more

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.

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.

Statistics for Osteoporosis and Low Bone Mass

Here are Osteoporosis statistics based on race:

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.

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

Food and MS

There is a question -- Does diet ake a difference?

Last year I wrote a series about that question called Food and MS. Here are the articles that made up that series:
Food and MS
Food and MS: Beginning to Prepare your Kitchen
Food and MS: Tools, Utensils, and Counter Top Utensils
Food and MS: Tips for Cooking
Food and MS: Let's Go Shopping
Food and MS: Diets
Food and MS: Nutrition
Food and MS: Nutritional Food Sources

Quality of Life for Children

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

This is a section of Health Central.

Pediatric MS: Quality of Life?

by Vicki on Multiple Sclerosis
Friday, August 20 2010

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

Pediatric MS - MS-like Symptoms

Here is my contribution to the articles written last week about Pediatric MS in MultipleSclerosisCentral.com. 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?

by Vicki on Multiple Sclerosis
Thursday, August 12 2010

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 more

and Lisa Emrich wrote:

Pediatric MS Centers of Excellence - Read more

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

Introduction to Pediatric Multiple Sclerosis

Here is the introduction for articles written this month about Pediatric MS in MultipleSclerosisCentral.com. 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

by Vicki on Multiple Sclerosis
Wednesday, August 04 2010

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 more

Grandchildren Understanding MS

An Open Letter to Grandchildren
by Vicki
Wednesday, May 12 2010


Dear Grandchildren, Mother's Days was just a few days ago. It always brings memories to me of scribbled cards and sometimes bouquets of wild flowers picked for me by my children. Some were actually weeds with little flowers they thought were so pretty, so they were flowers to me, too. Now my grandchildren, I always think of you as so cute,...

Read more

Sit and Stay Fit with Yoga

Here is an article, the first of a short series on MS and Yoga published on Health Central April 7.

Living well with MS can't exclude exercise.There was a time when my daily routine included walking for miles and playful activities like horseback riding, skiing, and dancing, but then I began to have trouble balancing and walking, so my life changed. I was familiar with yoga, and that fit right in as my abilities changed. When or if... Read more

There is a reference to yoga teacher Jenney Alterman's story. Here is the rest of Jenny's story.

"When I was a kid, I had a friend who was sick a bunch. She was always on the skinny side and was always kind of pale and weak. I thought it was just normal for some people to be that way. At the beginning of our freshman year of high school, we tried out for the basketball team. We had practiced all summer long and were so excited when we found out we made the team. We had visions of hoop victory, side-by-side showing everyone we deserved to be there. But a week later, we both got the bad news. My buddy, my partner in crime, my best buddy had mono. She would not ever play in a high school basketball game, she would never get to see me play in a game, and it would be nine months before I would see her again. That moment I knew something was not right with her. It wasn’t the mono, it was more than that. But at that young tender age, I had no idea what it was. Maybe it was just a feeling I had.

"A few years ago I attended training for yoga teachers and the adaptations of yoga for individuals with MS (Multiple Sclerosis). On that first day of training I knew what was wrong with my friend, she has MS. I haven’t seen my friend in many years and wondered where she was and how she was feeling. Wouldn’t you know a week after the training we found each other on Facebook! Wow, funny how the world works. I never made mention of MS to her, other than my training classes, but I think she knew that she had MS, but was unable to face it.

"I have always thought of my students and multi-level beings, containing both suffering and non-suffering parts of the body and mind, the way I want to be thought of by others. When working with someone, I see them as more than just a physical body. We are emotional and spiritual beings with different moods, energy levels, needs and desires. This is where yoga is so beneficial. We are not limited to the physical constraints. We can use breathing techniques, meditation and guided relaxation to promote a healthy mind and spirit to achieve freedom and flexibility beyond the muscles and bones.

"When working with MS it is important to respect the other person completely, understand the effects not just on the body, but on the mind as well. It’s hard for people with MS sometimes to face themselves in the mirror and not get depressed about their circumstances. This I believe is the most crucial part of the practice of yoga. Lifting the mood, accepting the body as it is and maintaining a healthy outlook. This can be the greatest obstacle to overcome for both the yoga teacher and student. However, this is not just limited to folks with MS, anyone can suffer this way. This surrendering is the turning point of many, and even though it is hard for all involved, I cherish every time I witness it. It means someone’s path has made a turn in a healing and healthy direction and that no matter how bleak the future seems, the mind and spirit can always shine a light to guide the way.

"My friend has since come out of the closet and shared she has MS. She now has acceptance and is on a path of light and love with all of us to support her."

Want to Walk this Weekend in LA?

One of my favorite online friends organizes a team walking for MS, and has been very successful earning funds for MS research. His team is named the JiggyWiggits. If you are in the LA area, and you are ready to walk for MS, think about this:

Michael invited you to "SAVE THE DATE - Emmylou Tribute - MS Fundraiser -Coming
April 10!" on Saturday, April 10 at 7:00pm.

Michael says, "This Saturday April 10th Join us for a great night of LIVE music
and a tribute to Country Singer Emmylou Harris at the Talking Stick on Lincoln
in Venice, CA. 100% of donations and proceeds from all auction items go to Team
JiggyWiggits!!".

Event: SAVE THE DATE - Emmylou Tribute - MS Fundraiser -Coming April 10!
Start Time: Saturday, April 10 at 7:00pm
End Time: Saturday, April 10 at 10:00pm
Where: The Talking Stick Coffee Lounge

To see more details and RSVP, follow the link below:
http://www.facebook.com/n/?event.php&eid=108233655861496&mid=222f2dcG1e223f6fG5851ebeG7&n_m=vvb%40aol.com

Do You Rely on Medicare?

Beginning April 1, and that is today, many physicians plan to reduce services to Medicare Services. No Fooling!

This is because Congress is on spring recess and they did not complete a vote before recess. However, if a successful vote is held next week, expiring programs will be extended for 30 days.

Plans being discussed include not accepting new Medicare patients, dropping all Medicare patients, laying off staff, or even closing the practice all together!

Baby Boomers are aging and swelling the numbers of Medicare patients. It sounds as if a large number of older people may be losing access to medical care, although they are still covered by insurance. Once again, No Fooling!

Walking for MS Awareness

If you haven't signed up to walk in Dallas, it's time!

Today is team captain early registration. The walk is Saturday, March 27.

Support MS Awareness raise funds this week.

Order your "I Walk Because ..." sign. These personalized signs will be posted along the routes March 27. Signs are $25, with $20 going back to your fundraising account.

Postcard Campaign for MS

During this month and week for MS, Our Heart Greeting has an idea to help spread awareness.

We're hosting our THIRD annual Postcard Campaign for MS!

Give it a try!

Exercise and MS

Besides improving mobility and strength, exercise therapy improves daily living, quality of life, and even the mood of MSers who participate.

What about fatigue? There is a theory that aerobic exercise might fight fatigue even though exercise usually heats up the body, and for MSers heat often results in fatigue. Hmm. Sounds like a vicious circle. Maybe not.

The University of Buffalo is researching that very question. Their study will determine "the effects of a 12-week aerobic exercise program on fitness, core and skin temperature, and heat flux in MS patients."

And here's something for everyone to consider. What you eat after aerobic exercise makes a difference in the benefits you get.

Be careful, stay cool, eat right, and stay fit!

Ampyra Approved!

Today Ampyra received FDA approval.

This therapy by Acorda Therapeutics increases walking speed in the four major MS types - RRMS, SPMS, PPMS, and PRMS.

Ampyra is in tablet form, previously known as fampridine. It is being developed in the US by Acorda Therapeutics, the company that works with zanaflex, and outside the US by Biogen Idec.

Ampyra is expected to be commercially available by March of this year. Read the press release.

Two Ideas

Michael B. Gerber has some clever ideas and observations that help us think outside the box. Here are two posts that do just that:

It can be done
Michael tells us a marching band from a blind school reminded him for something to be done, the idea must come to someone who then shares it. He asks us each to ask ourselves "What can I do?" When you have an answer, share it. It may be the beginning of something important.


The Story of an MSer taking a Skydive
I have been thinking about this since I first read it, falling, not soaring. Almost everyone I know really like it whether they can describe it or not. This is not in my bucket, but I am glad he did it and shared the experience with us.

I was struck by the fact that they were not just willing to accommodate him — they were ready and experienced to accommodate people with disabilities! What does this mean? It is not unusual for a person with a disability to take advantage of their service. How great is that!? If it can be done for skydiving, it can be done for many, many other activities.

Thanks for sharing, Michael, and Congratulations on your jump.

In a comment by Andriana she wondered “if our minds disable us from going/doing beyond the norm.” I believe, and I know I am not alone, that the brain IS the biggest personal disabler in people with and without disabilities. Are you feeling your disability excludes you from an exciting activity? Check it out.

Oral Medication

Okay, pills for MS are not yet available, but they are coming soon. Soon is a word we hear about medical trials quite often. We do not know exactly when soon means, but we are closer than ever before.

There are five, yes, five different possibilities of oral medications in trials at this time. The first two approved will probably be cladrbrine and fingolimad. Familiar names — coming soon to a pharmacist near you.

Many of us with MS have been waiting for these two oral medications to reach the market. When it happens, I hope there are plenty of pills and that they make a difference in our lives!