Many Scars

    

    

      Saturday was an absolutely beautiful day in Middle Tennessee. A great day for fishing or gardening or hiking or biking or whatever your favorite outdoor activity might be.

Now,

Imagine taking part in your favorite activity while wearing a lead suit, lead boots and gloves, and/or wax paper over your eyes.

     ANY activity would, of course, be more difficult and most of us would probably say, “Oh, never mind….I don’t think I want to do that.”

     400,000 American citizens go through that, if not every day, at least many days of their young adult lives, and NOT by choice! Accountants, lawyers, housewives, preachers, soldiers…

     These are the people who have been stricken with MS…Multiple Sclerosis…Many Scars.

     Saturday, April 10 marked the 5th Annual Sumner County MS Walk. Many such walks were taking place around the country. These Walks are to raise funds AND awareness of this disease, nicknamed “The Crippler of Young Adults”.

     (Is this a photography blog, or what? Yes, so let’s make short work of that. I go to the Walk each year to take snapshots for my sister and the groups who are participating. This year, the photos will be posted on the GALLATIN MS WALK page on Facebook. Go there, become a fan…’nuff about photography.)

     I have spent today researching various aspects of this all too common health problem. I will try not to get technical and probably will not footnote all of the web-sites I’ve visited in this research… www.google.com  is an amazing source, isn’t it?

     So, by most measures, it is estimated that there are 400,000 documented cases of MS in the U.S., increasing by around 10,000 a year, though it is also estimated that many who are diagnosed do not contact the MS Society so their numbers are not counted. Why so many more now than 20 years ago? Most likely for the same reason that when I was a kid, ‘old’ people died of “Old Age”.  Now we have the knowledge to name the plethora of afflictions that befall us, AND the knowledge to try to fix them…when we are allowed to.

     Multiple Sclerosis affects the sheath that covers the nerve endings, scarring it,  causing a mis-fire from nerves to brain.  To be extremely simplistic about it, you ‘short-circuit’!  It only affects the Central Nervous System, which only affects….uh….EVERYTHING!

     Currently, what is considered the best drug program involves ‘biologic’ medication…(read ‘stem cells’)   There are several companies who produce these drugs, though the treatment can run anywhere from 10 to 20 thousand dollars per year. (Most of these ‘evil’ drug companies will ‘work with you’, providing, in some cases a free year of the drug if you have no insurance, or greatly reduced rates if your co-pay is too high.)

     I did find this interesting info at www.nationalMSsociety.org/advocacy. The FDA does not yet have the authority to review and improve generic versions of these drugs. Congress can provide a statutory pathway for the FDA to approve.  “Introducing fair competition for biologic drugs is essential to keep the life-altering treatments affordable and to spur innovation.”

     There is a MAJOR health ‘care’ debate presently occupying our country. THIS is one of the things that should have been debated. Open the free market to competition! In health CARE, and health INSURANCE, which is really what the current debate is about.

     Speaking of government, one of the most disturbing facts that I found is that the 2010 budget proposal for a certain disease (that I have heard NO ONE dispute is caused by anything other than conscious ‘life-style’ choices, except in rare bad blood transfusions and babies born to mothers with the disease) is 19.4 BILLION dollars for American research, treatment and education (Tack on another 6.5 billion for global aid. www.kff.org/hivaids ). The 2009 budget for Cancer research was 5.26 billion…..disparity? Get this!

     Our government ‘generously’ allows 200 MILLION to be spent on Multiple Sclerosis research! That’s a whopping $500 per reported person with the disease! (Though we DO spend 20 to 30 times that amount in tax dollars for  treatment through Medicare, Medicaid, and other programs)

Is this a case of ‘the squeaky wheel gets the grease’? You bet!

I THINK SOME OF US NEED TO SQUEAK MORE LOUDLY!

Back to the local level.

     40% of the money raised by these Walks goes to the National MS society for research. 60% goes to the local chapter to help those in each chapter’s ‘support’ system. Hands gladly, voluntarily, helping other hands in need…through their feet.

     I don’t want to lose you. This is not a solicitation for donations…it’s not a plea for more government spending…I’m just trying to lay out some facts on a subject that touches me personally. All the info, and MUCH, MUCH more is readily available online.

     I want to end with my sister Katie’s answer to my question, “What do you, and others, expect every day…the next month…the next year?”

     “We all expect to see a cure soon, at least we hope for that. We all expect our MS to get worse but we hope it won’t. We expect a new oral medication to come out soon but know that the side effects could be fatal. We expect to have to make changes in our lifestyles as each year comes to accommodate the progression of our disease. The uncertainty of MS is the hardest part for me to live with. You just hope that each morning when you get out of bed that all your parts will work but you don’t know and by the end of the day one part of you may have stopped working. You may have lost some vision, or had to rest more or had a numb foot that caused you to stumble or been so fatigued that it is difficult to talk. That is the part that is most difficult. It is not the fear of dying from MS, it is the fear of living with it.”

 

 

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~ by rkpowers on April 13, 2010.

3 Responses to “Many Scars”

  1. AWESOME!!! I am so thankful to have such a wonderful big brother in this fight with me. I love you dearly.

    Like

  2. Well said–but I’m not surprised considering the source! I am so sorry I missed ALL of the Powers family on Saturday. My mom was so glad to see you and know how all of you are doing.

    Like

  3. Thank for the enlightment and the love…..Shirley

    Like

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