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Originally Posted by Conductor71
And doctors tell us when we're diagnosed in our 30's that we can continue to live "normally" for quite some time...considering the amount of stress we encounter every day from commuting to work, to work itself, parenting, and any other personal or relationship issues we may struggle with, I'd say that is quite an overly optimistic assertion devoid of any connection with reality. In fact, it borders on potentially being harmful to tell a patient this.
I'd also say that the few people who post here or who have posted who are doing well, lowering traditional meds or off them, have traveled for alternative treatments and seem to have dedicated themselves full-time to feeling better. They have shown positive results. I think this tells us a couple of things. That it is key to reduce or eliminate stressors as much as possible eg. toxic relationships, toxic work environments, etc.
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H Laura.
I just wanted to throw my two pesos into the ring, and ask you if you think it would have been better for your neuro to tell you upon diagnosis that you might as well pack it in right now, that there would be no hope for any kind of positive daily activity for you post-dx or that it would end very soon. How would that have helped you?
This is pretty much what happened to me, and I walked out of the office at age 34, with my profesional dance career finally just starting to blossom, and he made me think I would be in a wheelchair within five years, and never mentioned that many people do relatively well for 15 years or so... Fortunately I paid no attention ( well, not true, I paid attention, just didn't let it stop me) and went ahead with some kind of realization of my life's work. My guess is that you are concerned with getting empathy and understanding of the struggles involved, which is totally understandable. Because I have found that if people think it's easy or normal or routine for me, then they expect things from me that I can't do. SO I have often found myself in a position of "awfulizing' my situation because otherwise people are not going to realize the extent of my effort to achieve anything.
As to traveling around the world to pursue treatments - yes, I have been fortunate to hook a few of those up -although may I mention the third world seems to be infinitely cheaper than the first world, which has made many things possible if one chooses carefully. And I have been so lucky to make friends in those places, who have helped me considerably in emotional support...But I am not financially independent nor well to do, other than my extremely modest disability pension from the DSS and occasional help from friends or parents - which I know so many people don't even have that, so I do appreciate it. But just so you know, I'm no finanicially carefree upper crustman, and the main growth has come from being dedicated to searching for ideas and answers and concepts that make sense to me.
In terms of letting go of toxic work environments - I would give anything now to have my old jobs back - I miss my stuents and the dancers in my company so much -a sense of purpose and being needed in life feels so essential to my healng process, and its lack in my life is a huge barrier. So enjoy all your assets - your children if you have them, the ways that you are able to stay functional and contribute to life. It might be more than a blessing than you realize. Plus the positive doctor who wanted you to trust and believe in the strength of your body to deal with things - isn't that better than being sat down and shown videos of late-stage PWP, presented as "your near future"?
SOrry, Rick, a little OT. I'll make it up to ya.