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, , Patientslikeme 200.000 (47.000 )

Forum Acute Lateral Sclerosis

: (netnography) - Kozinets (1997)

(raw data) ( - - epatients) ( )

( )

( - ) People with ALS were not the people who sat on their hands waiting for someone else to make decisions in their lives...

am in charge of my care and decide what I want... Remember, it's your lives not the doc's, if you are not satisfied with your , fire him i did mine, he was a buffoon!

I have quit volunteering for any testing and will continue in my own direction and continue to do what makes me feel good

...I mentioned this to my Neuro a long time ago but regrettably it didn't seem to hold much interest... I'm sure he has his reasons and he certainly knows more about this illness than I do.. .As always don't delay seeing your Dr! Libby ... ..Always ask your doctor before using any medicines ..See your doc about its' benefits for yourself.. ...Ask your doctor what is best for you

..I hope you will trust your doctor's opinion

.. will discuss it with my doctor next time I meet him... ..Go and see your and explain your concerns to him..

I also believe that docs are not gods, but partners...

Your Dr should be calling in the troops, Physiotherapist to address your mobility issues and powerchair needs, Dietician to help with ways to improve your nutritional intake...

(dialectical self) , . Vincent Van Gogh.

(dialectical self) Dostoevsky (Bakhtin, 1981)


(Cooperrider, 1990)

& (, , lifestyle, )

(dialectical self) (positions) . , (Sarbin, 1986, . 18) . (Andoutsopoulou, 2015).

- Learned helpnessnes (Selingman, 1975 )


& , arlene Anderson arold Goolishian, Tom Andersen, Karl Tomm, Jacob Seikkula (. Hoffman, 2002; Mc Namee & Gergen, 1992) , (Androutsopoulou, 2015).Learned Social Helpfulness (Cooperrider, 1990)

, & (feedback loops)

, (Cooperrider, 1990)



"Believe me, you will know more than the doctors by the end of this. You may be lucky and get well-informed, caring gp's, etc. You probably won't ... "

"Become an expert and they can't fob you off."

PLM Network


Peer reviewed forums!Great work, Alley! Another study debunking the myth that resistive exercise leads to faster progression. I wonder why still advise against exercise? Has anyone found a study indicating that exercise is counter productive for ALS patients? Makes me wonder where the ... the need for a comprehensive reference manual for the newly diagnosed ALS patient so that they can quickly get off on the right foot without the getting in the way of progress. John.

Peer reviewed!the study was not single-blinded as is standard defined at different sites. 3 years post-diagnosis with minimal progression in clinical scores would certainly be a fairly rare ALS situation.

double blind trials are ridiculous. agree with all the points raised by other like minded contributors. although one aspect of placebo that hasn't been mentioned is the role they might play in identifying a detrimental effect of a trial drug

Peer reviewed!This presents an interesting conflict. I firmly believe in the necessity for placebo-controlled trials. Without them, given the variability in rates of progression, symptoms, and so forth, definitive results cannot be obtained in any other way. The exception might be if the proposed treatment produced immediate, dramatic effects on the disease progression but no discernible negative side effects.

They have all been extremely knowledgeable and compassionate in their care.

He is a wonderful doctor! He never rushes through your appointment, is current with everything going on in the world of ALS, has an extensive background dedicated to ALS and is activity involved with the research aspect of the disease.

expert knowledgeable skilled recognized

compassionate hope empathy positive and supportive friendly good sense of humor

give time straight honest positive clima

- = + (, 2014)