drewww! i saww youu, i didnt know whether or not to come over and say hi.. i saw you were leaving.. i read your quote from tuesdays with maurie - i read that book in class last year. (i might have already told you at the time haha) i havent talked to you in awhile i hope you dont think i dont care - theres an ALS RESEARCH thing under causes on facebook - you should make a facebook. i took a pledge to invite 100 people. which isnt much - the group has 11,111 members and they raised $1,775 - you should check it out. theres lots of people with causes for it under that too! - your always in my prayers. and stay strong drew =)http://apps.new.facebook.com/causes/267?m=6b07e&recruiter_id=791890if the link doesnt work let me know i could always email you my password and email so you can go onto my facebook to take a look
Hey Drew, check out my blog entry from today...thanks for the visits!!www.stevewhitenc.com
Hi I live in Sea Girt, NJ and I have not yet gotten a definitive dx. I started with slurred speech and therefore am interested in anyone who had bubar onset. Mine started around June '06. I have not gone back to the neurologist in a year because I am hoping that I have PLS and dont want to have a EMG for fear it will show that it has evolved into ALS. I am 47. I am a Capricorn too! I was a runner and exerciser and healthy up until 2 years ago. Could you tell me how your sx progressed?? I have stiffness in my legs , no weakness. I have a bad case of emotional lability-though I do enjoy a good laugh this is a bit much-makes going out a little difficult. I end up spitting wine out all over when I get going. Hands are affected, left more than right. I have severe balance issues and I fall quite a bit. 15 stitches in my chin last month...of course I could go on and on but will wait and see if you email me back before I disclose m entire history. Your taste in music got my attention too...
This is all new to me so I have gone back to the actual ALS site and have read alot of the threads. I too went to Columbia and saw Dr. Lewis a year ago. Prior to that I had been seen at NYH-Cornell where I was given a dx of PLS but put on Rilutek. I found that odd, I thought it was just for ALS. 2 weeks after starting Rilutek I ended up in the hospital with flu like sx which progressed rapidly to pneumonia, congestive heart failure, cardiac arrythmia, malnutrition, fever of unknown origin blah blah blah- out of hospital 2 weeks later and sx have progressed since then. I have a feeling I should be putting all of this down on the ALS forum...sorry!! as I said, it is all new to me.
I met Drew in China - in Shenyang - & want 2 thank him 4 bring my best, & only, source of medical info.. I don't have ALS but my cerebellum is actually shrinking....due 2 the dying cells....which can b seen over the course of several MRI's...my speech is bad - that is how it started - & I have some strength but very little balance & coordination...hope this helps..tks again, Drew... Barb (from PEI)
Drew,You are such an inspiration. I admire your strength and all the hard work you do. I'm praying for you always.Love,Gina
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