My husband was just officially diagnosed with CMT yesterday. For me, there is part of me that feels relieved to finally know what has been causing him so much pain. But I think he's having a really hard time accepting such a final diagnoses; and having learned there is no cure, his outlook appears bleak at the moment. So I found this forum while researching CMT and the best practices for prolonging healthy muscle mass, delaying the inevitable spread of extensive nerve damage, and any tips on ways to maintain our accustomed lifestyle as much as possible. I'm hoping to persuade him to post any questions or thoughts he may have, in his own words. And I'm hoping he may receive some constructive feedback. I just love my Husband, Nikia, so much. And I know he has to grieve the loss of control he will continue to experience having over his own body. He has to grieve the life he always saw himself living. And I want to help him through this whole process, grief and all. But also, as soon as he's ready, I want to be there to support him once he is ready to take action. He may be feeling low right now, but he is not one to simply sit back and let genetics beat the spirit out of him. So until he is ready to fight for himself, I'm starting the battle on my own. Information and learning from the experiences of others is a powerful weapon and I hope to find some of both on this forum.
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Hi eddingsnellie, sorry to hear about your husbands diagnosis, but I'm glad you're proactively looking to see what's out there. You're right to say that currently there is no cure; even with good pace being made on potential treatments, none of them are guarantied to work, especially where muscle wasting has occurred. I'm sure that everyone here is more than happy to answer any questions Nikia or yourself may have - fighting this disease with research and action is the most we can collectively and personally do. If he or yourself ever have any questions, we'll be here ready to answer!