Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 There's no winning is there?!!! As if living with self condemnation weren't enough out come the bloody 'know it alls' to pile up even more guilt!! Tell them POO! Download the information on the site and send copies for them to read. Let's face it, these people are so darn concerned about the situation, invite them to read up on what we know .... let's see... which part do they want to focus on .... 1. There is no cure (or maybe they've miraculously found one?!) 2. There is no specific medication so you shove what you can get at it and watch. 3.There is continual fluctuation and change, so what might seem to work today is crap tomorrow. 4. You work and care in isolation because so few actually know what this bastard does - but since they are 'experts' all of a sudden maybe they would like to take over and come visit and change shitty pants, mop up wee, talk complete nonsense, battle with stiff, unyielding limbs whilst attempting dressing, shaving ...... Let them come and do it! Best of all - let them arrange a nice little trip out in the car.... a - you are doing ALL you can to the very BEST you know how. Weare all proud of you here. Take no notice of the jerks.... you are a star! Sally x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 There's no winning is there?!!! As if living with self condemnation weren't enough out come the bloody 'know it alls' to pile up even more guilt!! Tell them POO! Download the information on the site and send copies for them to read. Let's face it, these people are so darn concerned about the situation, invite them to read up on what we know .... let's see... which part do they want to focus on .... 1. There is no cure (or maybe they've miraculously found one?!) 2. There is no specific medication so you shove what you can get at it and watch. 3.There is continual fluctuation and change, so what might seem to work today is crap tomorrow. 4. You work and care in isolation because so few actually know what this bastard does - but since they are 'experts' all of a sudden maybe they would like to take over and come visit and change shitty pants, mop up wee, talk complete nonsense, battle with stiff, unyielding limbs whilst attempting dressing, shaving ...... Let them come and do it! Best of all - let them arrange a nice little trip out in the car.... a - you are doing ALL you can to the very BEST you know how. Weare all proud of you here. Take no notice of the jerks.... you are a star! Sally x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 There's no winning is there?!!! As if living with self condemnation weren't enough out come the bloody 'know it alls' to pile up even more guilt!! Tell them POO! Download the information on the site and send copies for them to read. Let's face it, these people are so darn concerned about the situation, invite them to read up on what we know .... let's see... which part do they want to focus on .... 1. There is no cure (or maybe they've miraculously found one?!) 2. There is no specific medication so you shove what you can get at it and watch. 3.There is continual fluctuation and change, so what might seem to work today is crap tomorrow. 4. You work and care in isolation because so few actually know what this bastard does - but since they are 'experts' all of a sudden maybe they would like to take over and come visit and change shitty pants, mop up wee, talk complete nonsense, battle with stiff, unyielding limbs whilst attempting dressing, shaving ...... Let them come and do it! Best of all - let them arrange a nice little trip out in the car.... a - you are doing ALL you can to the very BEST you know how. Weare all proud of you here. Take no notice of the jerks.... you are a star! Sally x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 We need to print up some sweatshirts that say " dont critisize til you walk a mile in my shoes...then you can kiss my a$$ " Everybody thinks they just have ALL the answers. they should just TRY managing this juggling act for a week and see how bad it makes you feel to not be able to get EVERYTHING done that you wanted to do and then to be critisized for everything you do or dont do... Grrrr. > > We are working with a Neurologist. We started off slow - six > months > > ago - but things have really heated up and we are grateful for the > > Neurologist who is very familiar with the disease. > > > > SEPJ > > > > Quote Link to comment Share on other sites More sharing options...
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