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Multiple Sclerosis: Many Scars Damaging Nerves and How and Why You Can Help with Treatment and Research

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The party's over. Part of it was canceled by the Hurricane/Tropical Storm Hanna. We still skated and rode and had a great time!

However, while the Tour to Tanglewood for Multiple Sclerosis was delayed and shortened and is now over, for everyone with MS--and everyone who cares for them--the disease goes on.

So we need to keep going. Let's help them. Will you help me help them?

Many say the first sign of having multiple sclerosis was a sudden fall when walking. Some say it was numbness, tingling or pain in part of the body. For others, it's double vision, fatigue or dizziness.

We experience little pains and numbness and tingling and clumsiness and fatigue and diziness in skating, cycling, at work, while watching television, even while overeating at the buffet!...but we know it will go away if we change what we do.

Those with MS know it will come back, no matter what they do. As one person whose husband has MS says:

There's no cure for it, that's the awful thing. Everyone who has got it, knows they've got it for the rest of their lives.

Why help? Any reason will do, but as I only found out after becoming involved with the Tour to Tanglewood, someone in your life knows someone who needs our help, whether you know it or not. I keep hearing of team members who only learned of someone close to them who has a family member with MS after starting to ask for donations. It is only then that many will tell you how they are affected by multiple sclerosis in some way.

Who's affected? Multiple sclerosis strikes twice as many women as men, and most people's first symptoms show up while they are between the ages 20 and 40, but on the T2T we have met and heard of children who have multiple sclerosis. Some of these children have died from the disease, and one team, Team Erica, was founded to honor one of these children.

The risk of acquiring multiple sclerosis correlates to geographic location before age 15 years...further away from the equator means higher risk:

Studies of population migration support the notion that an environmental factor may contribute to the risk to develop MS. Specifically, susceptibility to develop MS appears to be influenced by age of residence within certain geographical areas. Individuals who are born in high-risk areas appear to acquire a lower risk if they relocate and establish residence in low-risk areas before age 15 years. In contrast, individuals born in low-risk areas may acquire a higher risk if they move and establish residence in a high-risk area before age 15 years.
http://neurology.ucsf.edu/msc/faq.htm
The risk of acquiring multiple sclerosis is higher for relatives of those diagnosed:
In general, first-degree relatives of probands have a risk that is 30-50 times greater than the 0.1% risk for the general population.
http://www3.interscience.wiley.com/journal/110515573/abstract?CRETRY=1&SRETRY=0
Quick, intense, quality treatment is key. Here's one place you can help! Here's a comment from and link to a support group that provides a community for those with multiple sclerosis, and for caregivers:
Recent findings suggest that oral steroid pills are just as effective at treating MS symptoms as intravenous treatment; the primary factor in the effectiveness of the treatment appears to be the high dosage over a short period of time, regardless of how the steroid is administered.
http://dailystrength.org/c/Multiple-Sclerosis-MS/support-group
Locally, the Wake Forest University Baptist Medical Center is helping to research an oral drug to replace daily injections many with MS take:
Dr. Jeffery says, "I think it's a vast unmet need in the M.S. patient population. It would be a huge advantage to have a medication which can be taken once a day orally and is a safe and effective drug."
http://www.digtriad.com/news/health/article.aspx?storyid=110099&catid=8

Great strides in treatment are showing that the correct quick treatment can make a huge difference. We need to keep searching for a cure, but your dollars will also go to treating the people nearby with MS, not just funding research in labs far away.

Your donation will go to provide the support for family and friends who are caregivers. They are the ones who touch those with MS on your behalf.

Let's help. Help me help those who help people with multiple sclerosis. Please.

How? You can send $1, $10, $100, $1000 or any amount (make checks to National MS Society) and please ask your employer if they'll match. Please multiply my effort by asking others in your life to help, and to ask others.

National MS Society
Donation - Roadskater.net team [or anyone's name or any team]
2211 West Meadowview Road, Suite 30
Greensboro , NC 27407
phone: 336-299-4136
1-800-FIGHT-MS
fax: 336-855-3039
ncc@nmss.org

You can donate $1, $10, $100, $1000 or any amount directly via credit card to the MS Society via the Roadskater.net team, a team member, or me:

http://nationalmssociety.org/goto/roadskater.net
http://nationalmssociety.org/goto/blake

The first quotation about MS above is from a woman of 76 years in New Zealand who leads an art therapy group for people with MS. Her husband developed multiple sclerosis over a dozen years ago and she started the therapy group afterward. She speaks of art in almost exactly the same words we have used so to describe one benefit of roadskating:

...it takes you right away from everything you are doing on an everyday basis. You're just concentrating on the painting, and you're not worrying about what's going on in the rest of the world.
http://www.stuff.co.nz/stuff/eveningstandard/4680889a6503.html

These and many other services and therapies help people deal with the recurring reality of multiple sclerosis, which sometimes is a steady decline, but more often described as a roller coaster ride of getting worse, a little better for a while, still worse, and so on. And it always stays with a person until they die.

I'm happy to say I do not know of a family member who has multiple sclerosis. So I don't have any fascinating and frightening stories to tell.

I have a neighbor a couple of doors down from me who has lived with multiple sclerosis for years. But I only know the outside of the house version, not the inside look only family can know.

But through a movie and book about music and life, I have seen into this world. The most powerful biographical story I know of in film involving MS is the movie, Hilary & Jackie (http://en.wikipedia.org/wiki/Hilary_and_Jackie). It's not a movie for kids or for the squeamish, because real life can get messy, even the real life of world class performers, ha! But what makes it great is that it's not really about MS; it's about life, joy, passion, music, sibling rivalry, love, betrayal, loneliness, fear and so much more. It's based on the story of a renowned celloist whose career was ended inexplicably at first before her diagnosis with MS:

In 1971, Jacqueline du Pré’s playing began an irreversible decline due to multiple sclerosis when she began to lose sensitivity in her fingers, as well as in other parts of her body.

* * *

Her last public concerts were in New York in February 1973, where she was scheduled for four performances of the Brahms Double Concerto with Pinchas Zukerman, and Leonard Bernstein conducting the New York Philharmonic. Du Pré later recalled that she had problems judging the weight of the bow, and even opening the cello case had become difficult. As she had lost sensation in her fingers, she had to rely visually, to know where she had to play on the fingerboard. Although she managed three of the four dates, she canceled the last performance. Isaac Stern stepped in to replace du Pré, performing the Felix Mendelssohn Violin Concerto.

In October 1973, she was diagnosed with multiple sclerosis, the disease that caused her health to deteriorate until her death in London on October 19, 1987, at age 42.
http://en.wikipedia.org/wiki/Jacqueline_Du_Pre
[As an aside, and interesting to me at least, while she is gone, notable instruments bought for or designed for her survive in excellent hands, as mentioned in the above article:
The Davidov Stradivarius, purchased for slightly over a million pounds by the Vuitton Foundation, is on loan to Yo-Yo Ma, while the 1673 Stradivarius, named the du Pré Stradivarius by Lynn Harrell as a tribute, is now owned by Russian cellist Nina Kotova. The 1970 Peresson cello is currently on loan to Kyril Zlotnikov, cellist of the Jerusalem Quartet.]
http://en.wikipedia.org/wiki/Jacqueline_Du_Pre
If major film treatment is not your style, the following documentary is an fascinating look into her life before diagnosis (and into documentary film-making before This is Spinal Tap). The film includes an introduction that updates viewers to the time after diagnosis and before her death. It is well worth watching even if it is rather light on information about multiple sclerosis and the private lonely horrors depicted in the 1998 theatrical release.
Du Pré & Elgar Cello Concerto - Part 1: http://www.youtube.com/watch?v=PToFY-Upaw0
In my quest to refresh my learning about MS, I've put together some links and quotations. I hope they'll be interesting and helpful to someone. The Mayo Clinic site is very simple and good:
In multiple sclerosis, the body mistakenly directs antibodies and white blood cells against proteins in the myelin sheath, a fatty substance that insulates nerve fibers in your brain and spinal cord. This results in inflammation and injury to the sheath and ultimately to the nerves that it surrounds. The result may be multiple areas of scarring (sclerosis). Eventually, this damage can slow or block the nerve signals that control muscle coordination, strength, sensation and vision.

[Some common symptoms are:]
  • Numbness or weakness in one or more limbs, which typically occurs on one side of your body at a time or the bottom half of your body
  • Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
  • Double vision or blurring of vision
  • Tingling or pain in parts of your body
  • Electric-shock sensations that occur with certain head movements
  • Tremor, lack of coordination or unsteady gait
  • Fatigue
  • Dizziness
These factors may increase your risk of developing multiple sclerosis:

  • Heredity. Multiple sclerosis is more common in people of Northern European descent. There also appears to be a genetic component to the condition, although the risk to children of people affected by MS is less than 5 percent over their lifetime. Researchers suspect that the tendency to develop multiple sclerosis is inherited, but the disease manifests only when environmental triggers are present.
  • Environmental factors. Environmental factors have some influence on multiple sclerosis. Many viruses and bacteria have been suspected of causing MS, most recently the Epstein-Barr virus, known also for causing infectious mononucleosis. Some studies have suggested that developing infection at a critical period of exposure may lead to conditions conducive to the development of MS a decade or more later.
  • Geographical factors. Multiple sclerosis is more common in countries with temperate climates, including Europe, southern Canada, northern United States, and southeastern Australia. The reason is unknown.
http://www.mayoclinic.com/health/multiple-sclerosis/DS00188

This site contains discussion of diagnosis including some explanations of the tests you might even do for yourself:
http://www.mult-sclerosis.org/diagnosingms.html
Multiple Sclerosis-Related Thinking Problems:
About half of people with MS will experience some form of cognitive dysfunction, or impaired thinking. For most, this means slowed thinking, decreased concentration, or decreased memory. In only about 5 to 10% of MS patients is this so severe that it significantly impairs their ability to carry out daily living tasks.
http://www.webmd.com/multiple-sclerosis/guide/related-thinking-problems
Some basic info on multiple sclerosis in an entry that is very thorough and includes extensive footnotes:
MS affects the areas of the brain and spinal cord known as the white matter. White matter cells carry signals between the grey matter areas, where the processing is done, and the rest of the body. More specifically, MS destroys oligodendrocytes which are the cells responsible for creating and maintaining a fatty layer, known as the myelin sheath, which helps the neurons carry electrical signals. MS results in a thinning or complete loss of myelin and, less frequently, the cutting (transection) of the neuron's extensions or axons. When the myelin is lost, the neurons can no longer effectively conduct their electrical signals. The name multiple sclerosis refers to the scars (scleroses - better known as plaques or lesions) in the white matter. Loss of myelin in these lesions causes some of the symptoms, which vary widely depending upon which signals are interrupted. However, more advanced forms of imaging are now showing that much of the damage happens outside these regions. Almost any neurological symptom can accompany the disease.
http://en.wikipedia.org/wiki/Multiple_sclerosis

More information on symptoms:

[Common first symptoms of multiple sclerosis:]

  • vague feelings of weakness, clumsiness, or exhaustion
  • blurry vision
  • one or more areas of skin that feel numb or tingly.
Other possible symptoms include:
  • double vision
  • weakness in your arms or legs
  • muscle stiffness
  • dizziness
  • loss of bladder control
  • depression
  • memory loss.
Usually the symptoms come and go unpredictably. The times when you are having symptoms are called episodes. The episodes may last a few days or weeks at a time. The times between episodes, when you are not having symptoms, are called remissions. Many people with MS are able to function quite normally between episodes.
http://www.med.umich.edu/1libr/aha/aha_mscleros_crs.htm
How does multiple sclerosis get started or worsen?
Possible Symptom Triggers
  • Infections. Viral infections have long been known to worsen MS symptoms. An important 2006 study indicated that bacterial infections can also trigger MS relapses. In the study, relapses appeared within 2 weeks of a viral or bacterial infection.
  • Heat. Heat, whether generated by ambient temperature, infection, or physical activity, worsens MS symptoms in about 60% of patients.
  • Stress. There is a strong correlation between severe stress and exacerbation of MS symptoms. Stress is not a cause of MS, however.
  • Trauma. Some experts believe that injury (trauma) to the head, neck, or upper back may trigger new or recurrent symptoms by disrupting the blood-brain barrier and allowing immunological attacks on the brain. This is a highly controversial theory, however, with very little supporting evidence.
http://adam.about.com/reports/Multiple-sclerosis.htm
Short circuits in the wires:
Nerve cells talk to each other using electrical and chemical signals. These signals must be sent very fast. In order for this to occur, cells must be connected by "wires." These wires are like long threads that extend from the nerve cell body. These threads are called axons. Some axons are short and travel from one part of the brain to another. Others are very long, and travel from the brain to the spinal cord. Some nerve cells are several meters long.

Electrical signals travel much faster through wires that are coated or insulated. This prevents them from short-circuiting. Axons are coated with a substance called myelin which allows for fast movement of signals from one area of the brain to another, or from one part of the body to another. Like gray matter, axons are also grouped together. Because myelin appears white to the naked eye, parts of the brain or spinal cord that are made up of axons are called white matter.
http://www.neurology.org/cgi/content/full/68/9/E9

Please don't let the name Multiple Sclerosis stop you from feeling this personally. Perhaps use the name, Many Scars. The many scars around the protective coating for the "wires" that transmit the signals to and from the brain and spinal cord and the rest of the body. 

Long term, we hope to find a way to stop the many scars from occurring.

Medium term, we hope to learn treatments that avoid more scars from building up over time.

Today, we hope to help those who have the many scars around their nerves live another day with less pain and more hope.

Let's help. Help me help those who help people with multiple sclerosis. Please.

How? You can send $1, $10, $100, $1000 or any amount (make checks to National MS Society) and please ask your employer if they'll match. Please multiply my effort by asking others in your life to help, and to ask others.

National MS Society
Donation - Roadskater.net team [or anyone's name or any team]
2211 West Meadowview Road, Suite 30
Greensboro , NC 27407
phone: 336-299-4136
1-800-FIGHT-MS
fax: 336-855-3039
ncc@nmss.org

You can donate $1, $10, $100, $1000 or any amount directly via credit card to the MS Society via the Roadskater.net team, a team member, or me:

http://nationalmssociety.org/goto/roadskater.net
http://nationalmssociety.org/goto/blake

Skateylove, roadskater

Location

National Multiple Sclerosis Society NCC Chapter
2211 West Meadowview Road, Suite 30
Greensboro, North Carolina 27407
United States
Phone: 336-299-4136
Fax: 336-855-3039
36° 2' 50.1396" N, 79° 50' 25.0404" W
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