News Postings is our version of a BLOG and will address topics under multiple categories including: Reflections, News, Events, Christopherisms and others we may add in the future.  These categories are intended to give you a glimpse into our life as we deal with the diagnosis of ALS.  We invite you to click on comments and give your feedback which will appear on the site.  The comments you make may spark further discussion and are greatly encouraged.  If you don't want your comment public, just send us an email instead.   Thank you for being here!

Viewing By Entry / Show All

March 13, 2007 | Show All

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?  

Posted At : 1:40 PM. | Posted By : STEVEN | Link | | Comments (4)

Steve, I just have to say that your Aunt Jane is a wonderful and inspiring person! I felt encouraged myself, to hear of her new found passion for painting. May you be blessed by God with many smiles today and everyday! I know that God is smiling to see all of the good work you do to influence and encourage others! <>< Molly Ann

Posted By MOLLY ANN / Posted At 3/26/07 3:06 AM

Hi Steve, I have read about you before. I believe I ran into your site when my son was dx with ALS on 3-29-06. The news tore at me. My son's illness changed my life completely. My son is only 38, will soon be 39. My son uses his wheel chair when he goes shopping with his family. If it means that he has a little ways to walk he uses it. He's got his feeding tube, he's had it for a while, he's got a breathing machine at home. My son has lost quite a bit of weight, I feel so bad when I see him, but I do not let him see me cry. He chokes when he tries to eat regular food, maybe you can give us some helpful hints. I have been attending the support group meetings. Just started not too long ago, because I was in denial for a long time. Oh, before I leave I must let you know he has no speech, he uses a little machine that resembles a laptop. I have not heard his regular voice in so long, it is breaking my heart. This post is too long, I must close, and expect to hear from you. May God bless you.

Irma Manzanarez (Rudy's mom) Houston/Tomball area

Posted By IRMA MANZANAREZ / Posted At 4/12/07 8:53 AM

Steve, sorry I almost forgot, say hi to your wonderful wife, Jennifer!

Irma

Posted By IRMA MANZANAREZ / Posted At 4/12/07 8:56 AM

Hi Steve:

I was DX ALS in 1/2007 at Shands Neurology Dept. in Gainesville, Fl. and secondly 4/2007 at Johns Hopkins, Baltimore, Md. Both diagnosed me with the "Slow Progressive" form since I first noticed symptoms over four years ago.

I would welcome a forum that would address this type of ALS. Please keep me advised and "Hang In There".

Di Stead

Posted By DI STEAD / Posted At 8/15/07 1:21 PM