Hoping to receive more understanding and awareness about CMT. My daughter and two grandchildren have CMT, we feel a bit lost at times, so it will be appreciated to identify with people who are experiencing the same difficulties living with CMT. Thank You All For Being Here.
So glad to have you here and be sure to share the site with your daughter and grand children! I have a daughter confirmed at a young age, now 21 and a daughter of her own; I was 40 before my diagnosis; I have at least one grandchild so far who presents with possible CMT. We are here to support and help anyway we can! Ask and share . . . This is how we become more AWARE!
Thank you CM, I’m so glad to be here, I don’t feel so alone anymore, it’s not just me, CMT and my family anymore. Hopefully, my daughter will decide to join us all here too.
Hope your daughter will in her own time, decide to give our group a try.We've all been in the various stages that come, and at times, re-occur; With any disease or chronic illness we have a grieving process, denial, acceptance etc. So, in due time, hopefully she will find that there are others who do, truly understand. I found others with CMT, can finish my sentences for me, when I would talk and start trying to describe what I experienced. Up until then, I felt it was pointless, b/c try as they may, even close family can not relate unless they too deal with CMT. You made a good step in supporting your daughter by joining us! We do hope you will find it is true support, as a caregiver and loved one, as much as sharing with her can bring her to acceptance and coping.
Thank you so much CM, your support has been an absolute tonic to myself in such a small space of time, having only joined the group less than 24hrs ago. I’m hopeful that my daughter will join us here, I totally agree with you, that it will be in her own time. ((((( Hugs To You Too))))).
Welcome Barbs. I'm older, going through diagnosis. I have an aggressive neurological condition which is like CMT in some ways, but all these conditions mimic each other to some extent. So I'm in limbo. But what counts - and I can tell you have this - is a positive mind set.
We can learn ways of adapting to whatever happens - and I find it helps if I don't see it as a disaster. There is a strong, shining humanity inside us all and having pain and difficultly can bring it out. John Keats called this world 'the vale of soul-making'.
Stay positive and loving, if you can; accept the dark times but feel the light of remission (however slight) when it comes. You're not alone.
Thank you Oxytosin, everyone’s support here has lifted my spirits immensely. Sharing does appear to make us stronger, best decision I’ve made in a long time, by joining you all here.
Thank you Oxytosin for reflecting such positive and kind thoughts! Our attitude is everything! Sharing and helping one another stay positive in our thinking, though not denying the difficulties, we can conquer the things that limit us! The biggest disability of all is attitude!
You and many others here do reflect that positive attitude!
"In every adversity there lies the seed of an equivalent advantage. In every defeat is a lesson showing you how to win the victory next time." ~~Robert Collier
Beautiful words of wisdom CM, we are all on the same journey, together we are stronger.