Comments on: Community Report: The composition and experience of the Multiple Sclerosis community http://blog.patientslikeme.com/2008/01/09/first-community-report-sharing-what-we-know-about-the-ms-community/ PatientsLikeMe - Patients helping patients live better every day Thu, 24 Jul 2008 14:20:01 +0000 http://wordpress.org/?v=2.3.1 By: Stephen Schwenker http://blog.patientslikeme.com/2008/01/09/first-community-report-sharing-what-we-know-about-the-ms-community/#comment-297 Stephen Schwenker Wed, 02 Apr 2008 19:45:42 +0000 http://blog.patientslikeme.com/2008/01/09/first-community-report-sharing-what-we-know-about-the-ms-community/#comment-297 Kathy, I know what you are experiencing all too well (except for the father-in-law). Hang in there Kathy, all we have to do is look around us and see that there are those whom are much worse off than we are albeit doesn't feel like it some times. One of the techniques I use is to make fun of my current circumstance, i.e., I constantly am dropping things, can;t type 80 words a minutes...now I peck like a chicken, the cramping and burning are without a doubt the toughest to "shake" off. I also have bladder and bowel problems and they are horrible, demeaning etc. Unfortunately we are most ofter left to our own devises which ain't much! Have you tied meditation? Are you familiar with the concept of a "self fulfilling prophecy"? Let me know if you have an interest, it does help. My user name in the community is "schwenks", so feel free to check out my profile, or feel free to email me. Hang in there Kathy, Steve Kathy,
I know what you are experiencing all too well (except for the father-in-law). Hang in there Kathy, all we have to do is look around us and see that there are those whom are much worse off than we are albeit doesn’t feel like it some times.

One of the techniques I use is to make fun of my current circumstance, i.e., I constantly am dropping things, can;t type 80 words a minutes…now I peck like a chicken, the cramping and burning are without a doubt the toughest to “shake” off. I also have bladder and bowel problems and they are horrible, demeaning etc. Unfortunately we are most ofter left to our own devises which ain’t much! Have you tied meditation? Are you familiar with the concept of a “self fulfilling prophecy”? Let me know if you have an interest, it does help.

My user name in the community is “schwenks”, so feel free to check out my profile, or feel free to email me.

Hang in there Kathy,
Steve

]]> By: stilladreamer http://blog.patientslikeme.com/2008/01/09/first-community-report-sharing-what-we-know-about-the-ms-community/#comment-62 stilladreamer Fri, 18 Jan 2008 17:59:29 +0000 http://blog.patientslikeme.com/2008/01/09/first-community-report-sharing-what-we-know-about-the-ms-community/#comment-62 Hi, I recently joined but can not keep up with getting back on due to high stress and now in bed. SPMS w/ full spectrum of symptoms...now nausea from sensory over stim. and irritable bowel and spastic colon tearing me apart. wish to say thanks, and will try to print out to read. when I am at my worse, I can not communicate...when I am at my best I am trying to be part of the person I was, and motivate and advocate for and with other people not as fortunate to be as pigheaded and stubborn as me! my mind is scattered from frontal love plaque, as well as every other part of my system being haywired. i know there are others like me but never got to read up or correspond with you. my dream and my goal is to become as stable as possible in all areas of the life that got literally ripped apart when I crashed and dr's were worried about law suits so didn't treat. spent most of 6-8 months desperately seeking treatment and then have tried to do self rehab since. animal therapy is good. horse therapy is a dream. whendx of SPMS rescued and rehabed 2, now struggle with burden of holding on to them and creating a network to share their awesome healing with others and to return part time to the consultant and training and advocacy for individuals who can not. just went through a big battle to get fatherinlaw into accute rehab after fx hip and surgery. was literally snowballed and railroaded by every aspect of the healthcare system! WON! PCP literally assaulted me and and yelled at my fatherinlaw and husband 20 minutes before transfer to facility of our choice near us, and well know to me thru the system. rest of family now making ugly statement and accusations about us, but we got what was best for hi,....at 93 he lived on his own, drove , fished, played golf, went to NC to other sons for 3 mos each year and is in good health and mind as sharp as a tack! system was railroading into NH due to age!! would have won. hope I "bounce back soon...please pray, he will be coming home with us for continued rehab before deciding where to live the next 10-20 years! kathy the dreamer Hi,
I recently joined but can not keep up with getting back on due to high stress and now in bed. SPMS w/ full spectrum of symptoms…now nausea from sensory over stim. and irritable bowel and spastic colon tearing me apart. wish to say thanks, and will try to print out to read.

when I am at my worse, I can not communicate…when I am at my best I am trying to be part of the person I was, and motivate and advocate for and with other people not as fortunate to be as pigheaded and stubborn as me! my mind is scattered from frontal love plaque, as well as every other part of my system being haywired. i know there are others like me but never got to read up or correspond with you.

my dream and my goal is to become as stable as possible in all areas of the life that got literally ripped apart when I crashed and dr’s were worried about law suits so didn’t treat. spent most of 6-8 months desperately seeking treatment and then have tried to do self rehab since.

animal therapy is good. horse therapy is a dream. whendx of SPMS rescued and rehabed 2, now struggle with burden of holding on to them and creating a network to share their awesome healing with others and to return part time to the consultant and training and advocacy for individuals who can not.

just went through a big battle to get fatherinlaw into accute rehab after fx hip and surgery. was literally snowballed and railroaded by every aspect of the healthcare system! WON! PCP literally assaulted me and and yelled at my fatherinlaw and husband 20 minutes before transfer to facility of our choice near us, and well know to me thru the system. rest of family now making ugly statement and accusations about us, but we got what was best for hi,….at 93 he lived on his own, drove , fished, played golf, went to NC to other sons for 3 mos each year and is in good health and mind as sharp as a tack! system was railroading into NH due to age!! would have won. hope I “bounce back soon…please pray, he will be coming home with us for continued rehab before deciding where to live the next 10-20 years! kathy the dreamer

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