Monday, February 14, 2011 5:00 PM
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Nicole Kane Gurland
www.myliberationadventure.blogspot.com I have never been one to post You Tube videos of my "before" and "after" walking abilities. I have footage of me walking and doing other things before my first two treatments. I have never done post videos. Why? I think that with 20 years of damage, my recoveries have never been miraculous, but dramatic nonetheless. I am a wobbling fool the day before my procedures. Within 48 hours after venoplasty, my balance is always significantly improved. But my walking isn't necessarily pretty. I had planned to do post-procedure videos after each of the first two treatments. I just kept waiting until the walking looked better. Both times I waited too long. Before I felt I looked good enough to record, I began losing my gains. I am now 10 weeks out from my third procedure, and still feeling great. But I am still self conscious about my walking. It is great relative to where I was before I was treated, but I want more. Although, I am beginning to readjust my thinking about what exactly "more" means for me. Way back in March of 2010 when I had my first procedure, my goal was to just stop the progression of my disease. To my great delight, I actually saw real changes in my balance, fatigue, swallowing, feet color, and stamina. I got greedy thinking of the possibilities! Alas, we now know that that treatment was not nearly aggressive enough to have any lasting benefits. I was the first person treated by this doctor, so I had no regrets. To the contrary I was even more determined to be retreated as soon as possible. CCSVI was real and I was a positive responder to the venoplasty treatment! Feeling good was my drug, and I became addicted! I needed another fix, and fast. Although my second treatment with the wonderful Dr. Ziv Haskal was more aggressive, my return to good health only lasted 2 months. I had too many things going on in my life to focus on rehab, and while I appreciated every moment of my improved health, recording my walking wasn't a priority. So here I am with the benefit of much hindsight. When will I do that video? I could do it tomorrow. I have been working hard in PT to rebuild atrophied muscles, and I am proud of how much I've improved. But all of my experience has also taught me that what I look like really shouldn't matter! How I feel and what I can do is far more important. A collective, "Duh!" from the Peanut Gallery is appropriate right now. I'm beginning to wonder if I will ever really be able to give up my cane outside the house. When I use it these days, I carry it more than I lean on it. When I do put it to the ground, it is with a light touch. That is in sharp contrast to the death grip I used to have on it with every step I took before each of my three Liberation treatments. I'm beginning to realize that carrying a cane out of the house is not a terrible thing. I am grateful for all of the places that I go now with only the cane, where I used to need the Segway or scooter. That's real progress! The bottom line for me is that I am so much better than I used to be. Until stem cell therapy is well established and I am able to repair my badly damaged myelin, I'm never going to be "perfect." As if that would ever be possible anyway! I don't want to care anymore how I look when I walk. I only want to care that I don't fall down while I'm doing it. I care that I can take my daughter shoe shopping, carry laundry baskets, go to three different grocery stores if I must, dance with my husband, and ride my stationary bike until my glutes burn like hell! Walking is a significant, but by no means only, improvement that has had a dramatic impact on my life. My spasticity is greatly diminished, I don't choke anymore, my toes are not purple, and I have much, much less cognitive and physical fatigue. Any one of these wonderful benefits would have been enough, but I have all of them! When I it put it in perspective, I am embarrassed that I ever worry about how I look when I walk. So here at the end of this post I am back to the place that makes me the happiest: The House of Gratitude. For better or worse you have chosen to join me on all or some parts of my journey. This allows you to see my warts as well as my "gold star" behavior. I think it is important for me to document the wild swings in my thoughts and emotions as I sail this uncharted sea. I hope that those of you who are where I am are nodding in understanding. Maybe people reading this that are lined up for treatment are gaining some insight into what it may look and feel like on the other side. For anyone who is reading this just cause they love me, thank you for caring. A big Happy Valentine's Day smooch to the three loves of my life! And I woof you too, Connor.
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