Information You Can Get Excited About

Subtitle: Cindy is a Miracle Worker

So a few weeks ago I wrote about how much thigh shots suck. Well, I finally got together with my “training” nurse, Cindy she introduced me to what I call “free style” shots.  That is, injections that do not use the auto injector provided but that your just stick in yourself.  Oh my gosh, s o m u c h   l e s s   p a i n f u l ! And less bruising.  Injections have become much less traumatic. 🙂

Now for the even better news / information.  Chris and I have attended a couple of seminars (sponsored by the maufacturer of Copaxone) to educate MS patients and their families on what is new in the research field, what clinical trials are currently recruiting, and Wednesday’s seminar on the importance of long term (drug) therapy.  This seminar on Wednesday was very encouraging.  The doctor is one of the best in the field, and is part of the University of Texas MS Clinic here in Houston.

Here are some of the highlights:

1. In the twelve year period studied with patients continuously on Copaxone (a small group), the average was less than one relapse every five years.  Seriously, that almost made me cry.

2. In the same group, over twelve years, only 8 percent of patients progressed to a point where they have problems walking. Eight percent.  My doc has already said that the goal is that I never lose the ability to walk.  That is a goal I can embrace and with those numbers, seems truly achievable.

3. It appears that the drug may actually activate central nervous system repair – not just slowing or stopping the progress of the disease but actually repairing damage.  Now this is an area where the facts and evience are not all in, but just the prospect is exciting.

(BTW, the study’s are mostly ten and twelve year studies because that is how long the drugs have been available on the market.)

So that is what I learned this week. As if I needed more motivation (which I do not) to stay drug compliant, I now have all I need to get over my “ouch that hurt” pity party for me.

PS. They had a motivational speaker at the end, who encouraged us to continue to follow our dreams.  His anecdotes made me think of a couple of my favorite memories of Dad.  When Chris and I got engaged, his reaction was: 1. I’m so happy for you; 2. I’ve got to get my crutches out and practice; and, 3. How am I going to pay for this?.  That was so my dad.  And I loved him for it. And even after years of MS wearing him down, we did dance at my wedding (even if unintentionally) and it is one of my happiest memories .ever.

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11 thoughts on “Information You Can Get Excited About

  1. Mom June 26, 2009 / 11:46 am

    Oh, this is indeed so exciting and I can wrap my head around those numbers 🙂 Thank God again for all the fund raisers and the scientists and doctors — the people who really want to eradicate these diseases. All we want is for YOU to be well and I know I speak for the whole Fam!!!

  2. sprite June 26, 2009 / 11:55 am

    Eileen, that’s great news! Clinical trials sometimes get a bad rap, but when you hear numbers like these, you can really be inspired by the good they are capable of accomplishing.

  3. Sarah June 26, 2009 / 12:04 pm

    Thanks for sharing this — such hopeful news. The prognosis is so much better today than when Dad & Aunt Anne were diagnosed. It looks like perhaps you’ll never have to practice dancing for your kids’ weddings. (Well, you might need to practice not to look like a goof, but that has nothing to do with the MS. :))

  4. Eileen June 26, 2009 / 12:19 pm

    @Sarah – do you mean tot say I dance like a white girl?

  5. Sarah June 26, 2009 / 12:32 pm

    @ Eileen – We’re not good dancers in our family. I don’t know if it’s the whiteness or some other factor, but it’s a true fact.

  6. Mom June 26, 2009 / 1:34 pm

    Even all that time & money spent on dance lessons, shoes, costumes, recitals, etc etc. — All for naught!!! 🙂

  7. Common Loon June 26, 2009 / 2:54 pm

    YEAH!!!!

    Thank you for sharing this!

    Hey, and if you have UT Medecine available (on par w/ Hopkins, Mayo, NY, & CA), why on earth would you EVER want to move? 😉

  8. mev June 26, 2009 / 11:38 pm

    eileen:
    Thanks for continuing to educate us all! I sent a link to my friend I told you about. Such hopeful news!!
    ((hugs))

  9. susan June 27, 2009 / 8:48 pm

    Great news to read upon coming back from vacation!!! 🙂
    I got teary reading parts. Happy day!!

  10. Common Loon June 29, 2009 / 3:52 pm

    “Hijack Alert!”

    Eileen said to type all about how beautifully cool and pleasant our weather is…low to mid 70’s, no humidity, sun, a nice breeze. Since the other 9 months our weather is much less pleasant, this would be our rare opportunity to boast 🙂

    Hooray for open windows and no A/C!

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