Thursday, March 30, 2006

Spotlight on MS Information

Each month, the National MS Society spotlights a topic, giving information and links to sites about that topic. March is about work; including advice on whether or not to tell, and if the decision is to tell, advice on how and what to disclose.

Previous topics remain available for at least 6 months. Still available are spotlight topics about Newly Diagnosed, explaining the disease and treatments, Stress, including tips to reduce stress, and 2005, the year in review with a review of progress and events.

They take suggestions for topics to cover in the future.

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MS Research News

Here is a summary of MS International Federation research updates:


A study identifies a relationship between fatigue and disability, depression, and quality of life.

One study concerns maternal transmission and suggests a respiratory deficit may be involved in pathogenesis. In the title describing the study a reference was made to “Persian patients,” but I did not find that reference in the text.

A study suggests vascular growth may be involved in relapses and spinal cord lesions in MS.

This study suggests that functional mutations do not play a major part in MS susceptibility.

This study explores the optimal FLAIR-imaging and evaluates the diagnostic efficacy in MS.


Here is a review of statins in inflammation.

technorati tags: MS, Multiple_Sclerosis, MS_Research, Health_Care

Wednesday, March 29, 2006

Service Dogs

Mary is an MSer who did in-home day care, went to graduate school, and taught before retiring. She has a strong family and friends support community, uses a walker sometimes and a scooter other times, and experiences fatigue – real fatigue familiar to many MSers. She leads a busy, active life, but she needs help.

She found her help in Ellen, a yellow lab. Ellen came to Mary through Helping Paws, a non-profit volunteer organization that promotes self-sufficiency. They train and place service dogs to help people with disabilities other than blindness or deafness

Life with a Service Dog chronicles the lives of Mary and Emma, helping, sharing, loving, learning to live together. Read their adventures and see their pictures.

For more information on service dogs, check out Assistance Dogs International.

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Thursday, March 23, 2006

Failing and Falling

Our greatest glory is not in never failing, but in rising every time we fail.

-- Confucius

When I first read this, and the next several times I read it, I saw “fall” instead of “fail.” Funny, I guess, because when I fail, it often means I fall.

The meaning is the same either way. It doesn’t matter if we fall, but it’s good when we rise. Failing can be an opportunity, a challenge, a lesson, a new beginning, and any number of things. Rising is not giving up. It can be as simple as accepting and changing directions, re-setting priorities, trying something else, or trying the same thing again. Rising is a positive attitude.

Failing is a part of life. Rising is spectacular, expressing hope, our greatest glory.

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Love and MS

How does MS make you feel? Fatigued? Helpless? Isolated? Hopeless? The disease attacks your body, yes, but it doesn’t stop there. MS affects not only your physical well-being, but every aspect of your life, including your mobility, cognitive ability, and emotions. Therefore, it affects everything and everyone around you, too – everyone whom you love and everyone who loves you

Bad news? Not necessarily. Having a loving relationship is still possible.

A teleconference on relationships and intimacy is offered Thursday April 6, at 7 PM. Register by phone 1-800-955-9999 or online.

Smile, and be hopeful.

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Tuesday, March 21, 2006

Research News

Here is a summary of new research findings as presented by the MS International Federation.


A study of IFNbeta-1a suggests a benefit in continued treatment after the first demyelinating event.

A conclusive study shows both grey and white matter loss affects cognition.

One study measures ventricular enlargement in relapsing and remitting and secondary progressive MS with clinically isolated syndromes.

An in vitro study shows remyelination.


Goat serum may improve conduction in demyelinated optic nerve fibers.

A survey of people with 4 different disabling conditions, including MS, found a significant number prefer complementary and alternative medicine to conventional treatments.

A study of patients with relapsing-remitting MS compares the efficacy of interferon beta-1a and beta-1b and found no significant difference after 6 years.

Check the MS International Federation web site for more research news.

Be sure to check this out --
An online MS guide evaluates frequently used treatments in the management of MS with a new chapter dedicated to unconventional therapies.

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Saturday, March 18, 2006

5 Things I Didn’t Know Before My Diagnosis of MS

1. You can’t tell by looking

There are so many hidden symptoms. MS for many people is an invisible disability. In some cases, it’s even invisible to the MSer between relapses. Because it’s not so obvious, other people don’t know I don’t feel well, how difficult it is to move, that I must park in the handicapped space or that I don’t have the energy. How embarrassing it is to say “No.” Some people think I’m a hypochondriac, that I’m being too dramatic and too quick to refuse a new activity. They can’t tell by looking.

2. Spasms are normal part of your day

I remember as a schoolgirl one of the bad name-calling words was “spastic.” Now I am one. I did not know exactly what it meant, thinking of dramatically wild seizures. Now I know. It can be as simple as a single muscle tightening in an immoveable limb or a tremor that one MSer described as a “jackhammer effect.” I did not know about spasms.

3. Vision is affected

MS is a neurological condition, not blindness. In my first visit to a newly diagnosed support group, one of the ladies had a big, black seeing-eye dog. One weekend my sight was consumed by static like a TV set that lost its signal. I had recurring double vision. The ophthalmologist said the nerve could be repaired, but there was no way to determine how long it would last – the MS was likely to interfere again.

4. Diagnosis is difficult

So many diseases are similar to MS, and MS is like so many diseases. A large portion of my path to diagnosis was eliminating everything else. I know chronic fatigue syndrome, lyme’s disease and lupus were considered, and I don’t remember what else. I went through batteries of tests and questions, and sometimes the answers were different than the time before. Finally, after over eight years, my diagnosis was “Probable MS.” After a few more years, it became safe to drop the “probable.”

5. Age is not a factor

Some people are diagnosed in their 20’s, some in their 30’s, some 40’s and some 50’s. My doctor told me sometimes autopsies are the first time MS is identified. Teenagers and younger children are now taken seriously when they complain of symptoms that sound like MS. Apparently MS can strike anyone at any time in their lives. I did not know that – but, to be fair, the medical professionals did not know either.

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Friday, March 17, 2006

MS Awareness -- Day 5

On this the last day of MS Awareness Week, Dr. Lawrence Steinman explained why one drug is not the answer for everyone. He continued by shedding a ray of hope in breakthroughs for the future.

Did you miss a webcast? Click here.

MSAwareness Week may be ending today, but we can continue to become more aware ourselves and ensure others know about the disease and what can be done to wipe out MS and help MSers until then.

The MS Walk is right around the corner. Last year's event brought us one step closer to a cure by raising almost $50 million.

The MS Bike Tour, now on its 27th anniversary, raised about $60 million to fight MS. This is the largest organized bicycle event in the U.S.

The MS Challenge Walk is a 2- or 3-day event that raised $7 million last year.

Champions Against MS connects MSers with event participants.

There are many ways to raise awareness throughout the year. Keep in touch with your local chapter and stay involved.

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Thursday, March 16, 2006

MS Awareness -- Day 4

Dr. Iezzoni talked about insurance and stress related to finances of living with MS. Dr. Minden talked about a study following MSers over a five-year period. Again, finances were a major concern in quality health care and quality of life.

When applying for disability programs, both presenters stressed the importance of documenting medical evidence. I will emphasize that you cannot relax your documentation standards after being accepted as permanently disabled. I regularly have forms that must be completed to say I am still permanently disabled. Track your progress and setbacks, copy the forms you submit and prepare to continuously prove you are permanently disabled.

Be sure to share your MS story whether you are an MSer, a caretaker, a friend or family member. Every story counts. The more we know about MS the disease and MS the lifestyle, the better we can handle/treat/live with the disease.

come face to face with MS

Tomorrow is the last day of MS Awareness Week. Become more aware by watching the webcast on better treatments presented by Dr. Lawrence Steinman.

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Wednesday, March 15, 2006

MS Awareness -- Day 3

Today I had a doctor appointment, so I’m later than usual with my post. Instead of listening to the 12 minute webcast, I read the transcript.

Dr. David Hafler says that our children do have a higher risk than the general population of developing MS, but only 1 – 3 percent higher because of a genetic disposition. It has been only in the two or three years that genetic researchers have been able to make great strides because of DNA tools and patterns. He says it is a special time in science.

After you see the presentation, spend a few minutes learning about the changing faces of MS.

come face to face with MS

Thurday’s webcast is Health Policies and Challenges of Daily Life with MS presented by Dr. Sarah Minden and Dr. Lisa Iezzoni.

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Tuesday, March 14, 2006

MS Awareness -- Day 2

Dr. Lauren Krupp’s 9 minute webcast talked about the symptoms children have that may point to MS. She said the kids are generally resilient and forward-looking when presented with an MS diagnosis.

Young people are a new population in the MS world, only a part of our understanding of the changing faces of MS. Take a look.

come face to face with MS

Send a message here or call and voice your support for NIH funding in the Budget. Talk to your legislators by calling, toll-free, 1-877-224-0041

Tomorrow is Dr. David Hafler with a webcast on Genes and MS.

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Monday, March 13, 2006

MS Awareness -- Day 1

I listened to the first MS Awareness webcast today. I recommend it. This puts a face and friendly voice to research. It was simple and quick. I chose to download the podcast to my computer, but you can listen without downloading.

The webcast was less than 9 minutes in the format of an interview with Dr. Calabresi of Johns Hopkins. He talked about drugs approved today for other purposes that may prove valuable in MS therapy. He sounded hopeful, but reminded us that research takes time.

Dr. Lauren Krupp’s Tuesday webcast on pediatric MS is available after 10 AM.

And don’t forget to check out the Faces of MS website.

come face to face with MS

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Sunday, March 12, 2006

Everybody has a Story

Today is the first day of Awareness Week.

A new website is launching today, illustrating the changing face of MS. Click on the picture of an MSer to see and hear the story. Every story counts -- MSers, caregivers, family members. Do you have a story? Everybody does. Add yours here.

come face to face with MS

Each day this week, a webcast is available beginning at 10 AM EST. Today’s webcast is presented by Dr. Peter Calabresi of Johns Hopkins.

Every Cause has a Ribbon

Ms. Chance had a great idea, interpreting this unpredictable disease as an ever-changing prism. It truly is a ribbon of Hope.

My favorite upright* Garry interpreted the prism ribbon electronically so I can always wear it on my site. Look on the sidebar below the archives list.

Be sure to wear your colors this week, MS Awareness Week.

*upright – a person who stands and/or walks upright

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Saturday, March 11, 2006

Research on MS & Children

Research on pediatric MS is making strides as reported by the MS International Federation.

One study showed the normal appearing grey matter, often affected in adults, is spared in children.

A retrospective study over a prolonged time period questions the conclusion that early onset MS follows a milder disease course.

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Friday, March 10, 2006

The Prism Ribbon of Hope

This first paragraph and ribbon card graphic are directly from the National MS Society web site about their ribbon.

"The ribbon, which produces a prism effect as it reflects light, was the innovation of Oklahoman, Linda Chance. The goal for her idea was to promote the "…ribbon idea as a recognizable symbol to advance multiple sclerosis awareness in a unique and powerful way." In 2000, Chance received financial support to further develop her idea through the Berlex Betaseron Champions of Courage Grants.

Because multiple sclerosis impacts people's lives in vastly different ways, and its debilitating symptoms are often unseen, we are promoting the MS Ribbon of Hope. As the prism ribbon seems to change color as it reflects light, so it symbolizes the unpredictable, life altering affects MS has on people's lives. The ribbon is also symbolic of the hope the Society provides as we press forward toward our goal to end the devastating effects of MS—forever. We hope people will wear it often."

The ribbon come affixed to a silver-colored card, which explains the origin of the ribbon.

Thursday, March 09, 2006

What's So Funny?

Sometimes nothing seems funny, but look again. A positive attitude helps keep things from being too bad.

I read an article in the HDIS Family Newsletter that reminds us that laughter really is good medicine. Saranne Rothberg, cancer survivor, leads the Comedy Cures Foundation to share the idea of therapeutic humor programs. The web site provides a newsletter and phone line 1-888-ha-ha-ha-ha (1-888-424-2424), and links to live events including a Laugh Lunch with Oprah, March 14.

Saranne and her foundation aren't alone. There is a personal blog that offers a Smile a Day. This site has funny stories and lists -- at least one new story every day -- and provides links to games and shopping.

So, take a moment away from the troubles of the day and laugh, or at least smile. It can't hurt.

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Saturday, March 04, 2006

Are the Children Safe?

When I was a kid I heard that MS is the crippler of young adults. When I was diagnosed and read everything I could find about MS, I learned it is an adult disease.

Most MSers are over 20, but children are increasingly being diagnosed. Apparently many adult MSers remember symptoms as children. Young MSers are treated with adjusted doses of adult medicines, but young people need to be treated as young people.

The National MS Society is providing $13.5 million for pediatric MS.

MS isn’t just for grown ups any more. Read about the changing face of the MSer.

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