smwelder
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  • Hi smwelder. I got teary eyed reading your response. i really hope my fiance can get over this hump because I been trying to get him where your at. Seems like the more I try the more he pulls back. He told me that he want me and the kids to remember him how he was (a fighter, strong, handling everything) and not remember him as he is now. He truly breaks my heart to see him that way. He don't understand that I rather enjoy a part of him then none at all... I wish you and your family the best
    Hi smwelder!
    Ive read a few of your posts and have just begun to realise how quickly things have piled up for you. I loved your post about having gone out into the desert: so full of hope and strength! I hope that you are getting your vioce questions sorted out, and that you keep that strong spirit.
    Blessings,
    Roderick.
    Hi...wanted to say I'm sorry you have to be here with us. I'm 38 and in this battle with you. Hugs. Where are you located?
    Hi, just stopping by to say hello, and am so sorry your progression is this fast. You seem to have a great attitude, enjoying your family as you said...and no dishes. Isn't that the truth. Take care of yourself as well as you're able. Hugs, Ann
    You are correct. Just heard from the Sr. researcher.. I guess I got it wrong: "We will probably start the phase 2 trial of the NP001 in April. I have not heard this target release date you mentioned. I don’t think this is correct. The phase 2 trial is 9 months long and then there would have to be a phase 3 trial before the FDA can approve it for market release." So sorry I had some hope here but guess it will be Aug..2012.
    They said it was on a fast track to getting approved. My doctor is also doing phase 2 in Houston.. In Dec clinic, the head of the research lab, told me it should be in Walgreens by August.. and my local doctor will administer. I will email him to see if they are still on track and let you know.
    Hello, this is your friendly neighbour stopping by to say hi LOL, actually I wish all the people on this board could live in this amazing community where all the doctors, aides, and all support would be there with us, I feel life for us all would be much easier, if I won the mega millions I would build it for all of us, anyway als cannot take away peoples dreams RIGHT!!! hugs to you and have a blessed evening cheers from Kim and Don.
    How does the peg tube feel today?? did you get it early as opposed to later on down the track ?? I hope you are having a good day and much love to you <<< hugs>>>
    Hi there how is everything going today? we are having a big snow storm here and perhaps ice/sleet later today :0( Don and I had the day off because the co-ordinator from the ALS chapter was coming to see us and get Don assessed but she could not make it because of bad weather, we have been just hanging out and making a list of quotes for Don's voice banking <<<< hugs to you and your family>>>>
    i just want to say thank you to Don for his service to our country . stay strong and smile
    Hi your advice is very correct as we do not know and we are taking each day as it comes for now, big appoinment is tomorrow and we have no idea what the outcome will be but we are prepared to take whatever is put on our plates, we have already been in touch with the north eastern als chapter & we have a home visit scheduled for tuesday next week and the paralyzed veterans of america has already called us and is sending us forms to fill out, we are very poor and live in an upstairs 1 bedroom apt so felt that if Don gets a secondary ALS diagnoses we will have to move fast with our community support, I will post an update on the board after tomorrow to let you all know about our second visit hugs to you and yours kim & Don.
    BIG HUGGGSSSSS TO YOU AND YOURS and thank you for your friendship, my husband is in the grey area his diagnoses dec 16th was probable lou gehrigs, we see an als specialist this friday, his speech /swallowing etc is getting worse by the day and I noticed his walk change this week whatever is happening to him is happening fast I will update you about my darling husband Don soon again thank you xo to you and your family regards Kim.
    Hello, I hope you had a good holiday. Ours was quiet, as usual...hung out in our sweats and watched tv (never even took a shower, it was great).
    Larry gets really frustrated, and comments a lot about his mind still being sharp, so I definitely see the similarities between you two. Is your wife a good talker, or does she keep things inside? It can make all the difference. Maybe if the time presents itself, you could tell her it is ok to talk about the emotional end of this. I think the emotions are the worst, because you can make accommodations for the physical aspects.

    MrsAck
    Jacki Ackerman
    PS. you might enjoy this chat room, I go there pretty much every day. client1.sigmachat.com/sc.php?id=144320
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