Slow Progression Question

There were an incredible amount of supportive and encouraging emails that followed the last posting.  Thank you all so much.  One person in particular brought something to my attention.  She was wondering if there were any other slower progressing patients out there.  Let’s define slower progression, generally, as still mobile and independent approximately three years from diagnoses.  This doesn’t mean you aren’t using any assistive devices, i.e. AFO’s (Ancle Foot Orthosis, aka Ankle Brace), canes, occasional wheelchair for long periods of walking or standing, etc.  Simply put, if you feel your progression is considerably slower than you anticipated, you are who we are looking for.

The purpose of identifying this demographic is that slower progressing ALS patients begin to feel slightly out of place in support groups.  The feeling is that we aren’t relating to the relatively normal progression of ALS very well.  We don’t quite experience the “Always Loosing Something” perspective of the disease.  This is not a reflection on either progression, simply an observation.  Therefore, if we can identify some people in this slower progressing group, we could begin a forum that would be helpful in dealing with some of the feelings outlined in the previous post, “I’m Still Here.”

Soooo, if you fit into this slow ALS demographic (physically, not mentally, ha ha) or know someone who does, will you please reply and let us know if this separate forum is of interest?