To Jenn's family, She was such a huge help to me starting in Feb this year when I diagnosed with Bulbar ALS. I will miss her terribly..... Her Family will be my prayers.. Linda
Hello all. I was just coming on to tell everyone that I wont be on any more. I am on oxygen now and everything is such an effort now.I dont think I have long left. I dont want to carry on like this now. Thanks for all the friends I have made. jennifer
Hi Jenn, how are you doing these days? I am in Denver.Going to see the nero on the 15th... My kids had a fundraiser here last weekend for me. So I can get my voice device. It was very touching and was also a huge help. Take care and I truly have been wondering how you are coping? Hugs, Lin
hi jenn... mum elected not to take rilutek so we haven't been having a problem with that. i've heard some very exciting things about KNS and I believe stage 3 of the trial is to open up at centres in Europe and UK (previously it had only been tested in America.) Ask your neuro about it, look on the Knopp Neurosciences website for details. there's plenty of reasons to be hopeful :D
jennifer... sorry to hear you weren't feeling so great when we last spoke... have you had any good luck with plateauing recently? couple of questions for you: are you on patientslikeme and will you have the opportunity to enroll in the KNS trial?
Hi Jenn, Oh my gosh, last night I had a total melt down. We had [rich and I] a wonderful weekend. We went to Denver ,visited with family,got back home and I just lost it... Don't know why ,maybe too tired. I felt so sorry for Richard. I try and ccry when he is not around. Anyway, I think it is because I am really having a hard time talking and eating. Just so sad and so darn hard..... How are you doing? Hugs, Lin
Hi Jenn, How are you doing these days? I have been gone for a couple of weeks. Went to Yellowstone with Rich. It has been real nice... I feel like I want to do everything this year while I can walk and talk and eat... All three of those things are getting harder and harder for me. This month has been the month for twitching ? everywhere? My fingers are starting to lock down and HURT! I feel like this is happening way too fast.... It was interesting to find out that I can't eat an ice cream cone. My lips don't work right? I tried eatting a choc candy bar today and it was all over my mouth. This is just crazy. I am trying to keep a good attatude about this ,but it gets harder each day.....Oh, you said that you are not sure about my email address? www.richlinkirk@aol.com Hugs, Linda
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