Sunday, June 29, 2008

MS, Horses, and the Olympics

The Olympics will be held in China this year. At the same place, a little later, Paralympics will be held, featuring athletes with a disability.

Here's some exciting news. Simon Laurens, who has successfully represented the UK in past Dressage events, will continue to do so in this year's Paralympics. He was diagnosed with MS in 2004, so he represents MSers as well.

Along with Simon will be Anne Dunham, also an MSer.

MS will be well represented in the horse events for the 2008 Beijing Para Dressage events. Good luck!

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Saturday, June 28, 2008

Hate Targets Disability

Garry's Blog asked the question, "Who could hate the disabled?" Well apparently someone does.

Garry uses data visualization to show patterns of hate crimes against people with disabilities. He used FBI data broken down by type of crime. Take a look.

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Friday, June 27, 2008

Facing Change

Charles Darwin did not have MS. What he did have was a theory of natural selection. Often his theory is summarized as “survival of the fittest;” however, he was not referring to brute strength. Darwin said: "It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change."

One thing in life is certain -- there will be change. Change can be difficult, but it can be very exciting, too. Whether it is good or bad depends on how we respond and adapt. It takes innovation, but it especially takes attitude.

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Monday, June 23, 2008

Cause and Treatment

Healthtalk has so much information! Of special interest are a webcast and a possible treatment.

Thursday's webcast is, "Causes of Multiple Sclerosis: Is a Virus to Blame?" Leading MS experts will discuss ongoing research and the role viruses may play in triggering MS. Interested? Register here.

In the same newletter is news of a possible treatment for aggressive relapsing-remitting MS. High doses of a cancer drug may provide improved function. It was a very small trial -- only nine MSers -- but it had very promising results.

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Sunday, June 15, 2008

Cool Off Your Palm

Summer is almost here, and in places like Texas, the heat already feels like summer. Many MSers are heat sensitive and experience exaggerated symptoms with heat. What can we do? Suggestions include staying in air conditioned areas, wear specialized cooling products, and drink cool liquid. Sound easy enough, but it may be even easier than it sounds.

Research has found that cooling one hand allows heat-sensitive people to extend their physical activities. Research subjects walked on a treadmill. When symptoms began to exaggerate or the subjects became fatigued, they cooled their "non-hairy skin surfaces" (that's the palm of their hands), and were able to continue.

Simply cooling the palm of one hand can increase endurance. I remember when I was overheated at the beach, I could cool off by walking in the shallow waves. If cooling my feet can actually make me feel cooler, it makes sense that cooling my hands can do the same. Even if it's only the palm on one hand.

And guess what! More research with larger groups is needed. Most of the research results I read indicate that more research is needed. Until we hear more, I think I'll keep my palm cool in the hot Texas summer.

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Thursday, June 12, 2008

He Keeps Going and Going

Ron Bachman is among ten Energizer® Keep Going® Hall of Fame finalists. What an honor!

I first learned of Ron's story in the current issue of Amigo's newsletter Friendly Wheels. His story is inspirational, but more than that, it tells of a boy who faced extraordinary obstacles in his quest to lead an ordinary life. The phrase sounds trite, but the story is more than that.

The award is a recognition of people who, like the familiar pink bunny, keep going no matter what. The candidates include ten remarkable people:
  • Ironman athlete
  • bone marrow donor fund raiser
  • autism educator
  • inner city concert violinist organizer
  • violence prevention advocate
  • crossing guard neighborhood activist
  • educator extraodinaire
  • breast and testicular cancer advocate
  • foster care children advocate
  • and, of course, Ron
Read their stories to see how remarkable they actually are. The group includes two amputees, a young leukemia patient, the mother of an autistic child, and others who saw situations that needed improvement and stepped up to the task.

You can vote once a day for the extraordinary person of your choice. Each vote cast provides $1 to the Cal Ripken, Sr. Foundation to introduce underprivileged kids to baseball.

Do you know someone who keeps going and deserves recognition? Here's an idea! Send your own personal Keep Going Award sanctioned by the bunny himself!

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Wednesday, June 11, 2008

Osteoporosis and Me

Bone health is important, and a chronic condition like MS makes it even more important. Strong bones are crucial to our health, our daily lives, and our overall quality of life. For me, the story is personal.

Osteoporosis does not discriminate. It does happen to little old ladies, walking bent over, who break their hips when they fall. Historically, it's been a normal part of aging in women. However, the truth is that osteoporosis sneaks up on energetic, active people like Sally Fieldand me. And it sneaked up on 10 million other people in the United States. Wow.

Among those millions are all types of people, mostly women, but men, too. Many of them also have chronic conditions and disabilities, like me. I have MS, and my osteoporosis is severe, described as "off the charts." Each jostle is a new breakage opportunity, and my bones are extra breakable

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Monday, June 9, 2008

On Creativity

"……the only way to work on perfection is in the form of an objective work that is fully under your control and is perfectible in some real ways. Either you eat up yourself and others around you, trying for perfection, or you objectify that imperfection in a work, on which you then unleash your creative powers. In this sense, some kind of objective creativity is the only answer man has to the problem of life. In this way, he satisfies nature, which asks that he live and act objectively as a vital animal plunging into the world; but he also satisfies his own distinctive human nature because he plunges in on his own symbolic terms and not as a reflex of the world as given to mere physical sense experience. He takes in the world, makes a total problem out of it, and then gives a fashioned, human answer to that problem. This, as Goethe saw in Faust, is the highest that man can achieve."
{Ernest Becker, “The Denial of Death”, page 185.}

Freud also saw the value of creativity in the individual`s struggle to defend himself against being overwhelmed by his knowledge of his mortality. He believed that all of man`s defenses arise from that most primal defense, that of pure repression. Be they hysterical, intellectual, obsessive, compulsive, depressive, etc. postures, man must limit his conscious knowledge of his mortality by restricting his lived experience to a safe existence shared by the vast majority of his comman man. Yet Freud, perhaps influenced by his single-minded devotion to his life project, understood sublimation, the ability to cathect neurotic energy into creativity, as the one defensive posture that seemed to have no life-diminishing properties.

Unfortunately, I believe, that very creative process that allows man to live a less “neurotic” life comes with a terrible burden. The very striving to leave something of value behind, to outlive us, brings into clearer focus the dilemma of our mortality. As the Artist, in Rank`s sense, attempts to create, he becomes terrified at his temerity in doing what is God`s work. It is here that many artists shrink from their creative urges, and fall back on their more neurotic defenses in order to shield themselves. Some others bow to their lack of courage through psychotic breaks with reality.

I`ve always found it interesting that Freud and Jung had such terrible panic attacks when approaching Rome. Yet neither man seemed able to relate their terror to the symbology of Rome as the seat of a major religion. Because of his devotion and single-mindedness to psychoanalysis, Freud seemed unable to reach a personal resolution with nature and its Creator. Even Jung, who always relied on God, could still faint away with the burden of life.

For me, what ultimately resolves the terror inherent in sublimation for many artists is their understanding of their place in the Creator`s plan. As Becker describes the insight of Rank and Kierkegaard in regards to creativity and immortality, ……”one should not stop and circumscribe his life with beyonds that are near at hand, or a bit further out, or created by oneself. One should reach for the highest beyond of religion; man should cultivate the passivity of renunciation to the highest powers no matter how difficult it is. Anything less is less than full development, even if it seems like weakness and compromise to the best thinkers”……….{Becker, op cit, page 174.}


Tuesday, June 3, 2008

Looking for a Place for Mom?

Are you looking for a place for Mom? No? What about a place for you? A nursing home.

That doesn't sound desirable, but let's look at reality. You may not have the luxury of staying at home, and what if you don't know any other options? Apparently, MSers are "a significant and growing number of people seeking such care." Nursing homes are typically inhabited by old people, but there is a new generation of residents, and many of them are MSers.

When they can no longer transfer independently and need assistance, they become candidates for long-term care. However, MSers may need specialized care that is different from most residents. They are younger and probably will live there longer than most residents, and some need specialized equipment. Even though they are physically dependent, they are likely to be mentally alert and wanting different stimulation, mobility, and accessibility than most of the 80 year old residents.

So how do you find the right place? A Place for Mom has advisers ready to assess your needs and find some options. They have some nice articles, including one addressing MSers needing long-term care. If a nursing home is a possibility -- or a probability -- wouldn't it be a good idea to find a place yourself?

Oh, and by the way, they will be glad to help find a place for Mom or Dad, too.

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