news

[CRF8]

Brian, my wife had to do a "sniff test" twice to be accepted for DPS implant. They watch your diaphrams ability to function while you inhale through your nose. I didnt know they could rate the results, for us it was a yes or no answer.

 

[indigosd]

Doing the happy dance for you, cukita! I am so glad for you. Because we are so far from the ALS clinic, the MDA will help us locally. They are such good people :]

 

[indigosd]

vmd, I was a little disappointed in the article. It isn't really anything new. My Husband could not take the Rilutek due to the side effects. I hate to sound suspicious but I do wonder about a kickback somewhere along the line for prescribing Rilutek. It is extremely expensive...why would the drug companies want to work on finding a new drug if we are all willing to pay $1000/month for a drug that may extend our PALS lives for 3 months?! Rilutek had been FDA approved since around 1995-correct? The cost of the drug has never decreased. Doesn't anyone else find that odd? Doctors often buy stock in Drug Companies or they get kickbacks from the drug companies if they prescribe x amount. That is the truth. Just something to think about in your free time lol CJ, I wish that I could figure out how to dress my avi for the holiday! Love Mona's new look :] Brian D, found your information so interesting and thank you for sharing! Bif Mike, I always love your posts!

 

[hopeful warrior]

indigosd~ You have a very valid point. Drug companies have long been seen suspiciously regarding medicines to cure anything. I do know my sister in law worked for Cephalon for quite a while. Cephalon ran drug trials for ALS. It is crazy.

I would like to think people really are trying to cure this beast. I seriously don't think I could get out of bed some days if I knew they weren't.

 

[vmd]

indigosd;

Yes, it seems that there is no startling news in the article, but what I gathered from the article was that a coordinated effort by knowledgeable professionals can make life easier for the PALS. It seems to also imply that your run-of-the-mill neuro may not apply this knowledge to the individual PALS he/she is taking care of.