Monday, September 19, 2011

Set Backs and Strides Forward

Well, life goes on.  There are some days when the coffee comes out perfect, the hairdo looks good and all the lights on the way to work are green.  And there are other days when you are thrown for a loop, and it makes you take a few steps back to reassess the situation...or, let's be honest--it makes you scream and cry, and pound your fists!  And THEN you step back and pull yourself together as best you can...and reevaluate the path that lies ahead of you.  

We recently had our CMT support group meeting, where we discussed the things that have helped us, and issues we still struggle with.  You can never have one without the other when you have this disease; it's just the nature of the CMT beast.  Luckily I did have positive things to share, such as a supplement I found a few months ago called 'NeuroRecovery' that boasts its abilities to support nerve tissue renewal and remyelination for people with neurological disorders.  I have seen a lot of positive changes since starting to take this daily supplement: my balance is better, I have less numbness in my legs and hands, and I don't feel like I'm trying to stand in the middle of an ice-skating rink in heels when I take a shower.  All good things!  In the near future I'm going to try another treatment called Russian Stimulation (it's sounds more fun than it is, I think...) which is a form of electric stimulation that is supposed to help improve your muscles.  Quite frankly it makes me a little nervous, and brings back scary memories of childhood visits to 'The Neurologist' which were never about anything pleasant...and involved painful nerve conduction tests that still make me cringe!  The difference is that now I am an adult, and if something REALLY hurts, I have no qualms about aiming a well-placed kick to where it will do the most damage.  (Just kidding, Dr. T!)  Of course, like other opportunities that come my way, I will try it...hopefully it will involve minimal pain and also bring on some improvement!

The recent setback I mentioned was a little upsetting, and I admit...I DID scream out of pure frustration.  Sometimes you just have to let it out!  You see, years ago when I actually found out that CMT existed, I was sent for a blood test to confirm that this was what I had.  I think the actual test took about 10 minutes, and I was told that I did have CMT and there were 16 different types (I think they have discovered more since then)...and some point after that statement was uttered, is when my memory gets a little fuzzy.  I think I was in shock!  I learned that I had this disease with no cure; a disorder 'The Neurologist' had never mentioned...that NO ONE had ever mentioned before.  I'm pretty sure they told me what type of CMT I actually had, though to tell you the truth I don't remember.  At the time it didn't seem to matter fact, for the next 14 years it still didn't seem to matter.  I had CMT, my symptoms were what they were, and most people within the medical community (and beyond) still had never heard of my disease.  Until I learned about a local CMT support group that was starting in Albany, I pretty much went on with my life as before, learning how to adapt the way I did things as my body would change and tasks became harder.  I never dreamed that I would one day meet others with the same disease, or that there would be a group of scientists from many different countries working to find a medication to finally stop the progression of CMT.  But those things have now happened!  And that brings us to my dilemma.

I figured for all these years that the type of CMT I had was Type 1A, which is the most common.  I seemed to fit the criteria for 1A, whenever I had the opportunity to read about its symptoms.  And once I found out that the CMTA scientists were hopeful they would find a medication to stop this type within 3-5 years, I was even more excited!  Until I found out last week that I don't, in fact, have Type 1A.  Is this the end of the world?  Hardly.  These wonderful scientists are also working to find a medication to stop CMT Type 2, which will take longer than 3-5 years most likely, but I believe it will happen...and I continue to have hope.  Of course, I am still waiting to find out exactly what type of CMT I do may be type 2, and it may not.  My medical records are lengthy, and it takes a little searching to find the answer.  If I don't have type 2, well...I'll cross that bridge when I come to it.  In the meantime I'll continue with the supplements that are working, and hopefully find some more.  Which leads us to my other insurance (Medicare) pays absolutely NOTHING toward the cost of alternative medications, so you may soon see me on the side of the road with a sign saying "Will Work For Supplements"...if you do, wave hello and honk your horn!

And if you are a reader who has CMT, check out this website if you'd like to learn more about 'NeuroRecovery' and possibly order your own...even if you don't have this disease, but you do have another neurological disorder (such as Multiple Sclerosis) you may find it beneficial:  Any further treatments I come across I will be sure to share, including my results from the Russian Stim (hopefully I will have NO pain or bruises to report, and neither will the doctor!)  In the meantime I intend to keep fighting...if and when I come across any further hurdles, I will do my best to cross them and continue on my way!


  1. Christine , you are aware I come from a Military background . One where nothing is what it seems , and changes happen at a moments notice .That being said , I hold you as one of the strongest willed , most adaptable , and quickest to accept a challenge, of all people I've ever encountered !
    Your setbacks , though disparing , and so very hard to take ....seem to make you even stronger in your resolve to forge forward , and
    prove to yourself , and others with your illness , that CMT will not controll your life , as long as you have the will to fight back !
    The news of the supplement is very encouraging, and I know you'll continue your search . Having used "Russian Stim " after 9
    leg surgeries, I can tell you it is a wonderfull
    treatment to build up unused mussel , and really painless . You will be amazed at how fast it will build up your strength , and add mass .
    You won't be needing to "kick the doctor " .....
    but my guess is , you will be able to " kick " !

  2. Great recap of the meeting. thanks for sharing your success with the nerve supplement. Look forward to hearing how the "Russian Stim" goes. See you Saturday earlier now at 5:45