- a pause to my postings.

October 20, 2009

I think I am going to take a break from posting for a while.

It is discouraging to me that the experiences and sharing of those of us who are

active, and mild in symptoms, are discouraged either overtly (thanks to the few

of you who have threatened me with progression in my symptoms as retaliation for

my positive posts) or subversively through the dismissal of research and

theories into CMT that are pushing the boundaries of our knowledge.

I thought this forum was supposed to be open in nature. Instead I find a rather

singular view persists, and for those of us who want to push the boundaries of

the view, we are met with a rather " traditionalist " response.

I have been contacted off list by folks with CMT who are mildly impacted who

have shared with me similar concerns. I appreciate being contacted off list and

welcome it. My email is on my website. I take the time to reply to each person

who contacts me. I have been contacted directly by other triathletes, runners

and active people with CMT. It is inspirational. Motivational. And shows me

that there are people like me out in our CMT world, who are seeking without

judging a positive approach to living and being active while having CMT.

For those of you who want to keep up with my learnings and experiences, feel

free to read my blog/share your comments and experiences. I have the following

blog posting schedule:

Monday = training

Tuesday = fitness tips (applicable to anyone, including CMT folks)

Wednesday = charity fundraising and awareness

Thursday = my thoughts (no specific topic)

Friday = food / recipes

I don't keep to posting every day, but I make sure that my posts align with the

themes above. You can subscribe to my posts.

I will keep on reading, and enjoying the research that is posted.

Best wishes,

Donna from London

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