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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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I am fortunate to have a young cracker jack neurologist on my treatment team who is one of the docs who suggested a service dog early on when I was experiencing such severe balance issues thanks to the CRPS rogue autonomic system issues. I was initially resistant to this for a variety of reasons but eventually decided to apply for a dog. What I quickly learned was that I could have a five year wait to get one, or I could shell out from $40,000 to $60,000 to get one sooner. Given that so many of the breeds that are routinely used for service dogs are "cancer factories" I saw both options as too risky (In addition to the fact that it was out of the question financially.) Since both options were not the best I kept digging and discovered a non profit group that teaches folks with disabilities to train their own dogs. I was skeptical because I had such severe limitations, but since I have had extensive experience with training dogs I kept learning. What I discovered is that people who have no arms, people in wheelchairs, even people with speech impediments have successfully trained their own dogs. Like everything else related to my journey with CRPS intensive research has always paid off. The result is Tootsie. It wasn't easy, in fact it was at times overwhelming. My balance has greatly improved while on tDCS. Many of the more miserable autonomic system symptoms compliment of CRPS are totally gone. I am puzzled as to why I have not yet licked the balance issue but I am confident that I will. The one thing I am obsessed about is beating the odds, beating the system, beating the insurance companies, beating SSDI, beating the doctors, beating the CRPS menu of treatments that have little hope of helping and great risk of making me worse, beating every road block, etc., etc., etc. Having a service dog is a small but effective weapon. If I attain remission or even partial remission (not sure what that means but it sounds good) I will still be reliant on her. One of the things she does for me is to keep people away from me when I am in public. It is amazing, but when I was only using a cane mothers would look on as their children ran crashing in to me. People would run into me with carts, etc. I do not under estimate the effects of being bumped into by others. Even though I limit my outings in places like Walmart, when I do go, no one comes near me now. Mothers grab their children, even people I know just smile or wave and keep on going. It used to be that people I knew would stop to chat and invariably try to hug me or pat me on the shoulder. Additionally, people go out of their way to steer their shopping carts in another direction. I don't advocate that everybody with CRPS should consider a dog or even that they train their own. Training your own dog takes a major commitment of time not only to do the training but to learn how to do it, in addition to keeping up with the training on a daily basis. You have to be highly disciplined because training must happen every day no matter how much pain you are in. Will there come a time when Tootsie races across the room roused from a deep sleep by a fork I have dropped on the floor. Probably never because she has been highly trained to not only respond to that, but it is her work and she loves it. I do hope that there will come a time when I routinely pick up things that I drop. In addition to many symptom reductions thanks to tDCS I have also experienced a drastic decrease in the frequency of dropped items. Could tDCS put Tootsie out of a job? I used to think that CRPS was job security for her. Now I am not so sure. At any rate giving her up would never be an option even if I was cured tomorrow. Wow Hampster, you ask some good questions! What ever you do do not give up your tDCS treatments! If one electrode montage doesn't work there are more to try!!!!!!! Hugs to you! Last edited by ballerina; 05-26-2012 at 08:41 AM. |
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