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.