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  • Well Kel, he is bulbar, so his speech is mostly gone, and his swallowing. Looking at getting a dynavox, and feeding tube soon. I really am so very sorry, I can't imagine how you must feel. Do you have support? Just keep in mind that no two people are alike, there have been peopple lived for years with this disease. I hope that is the case with you:) If you ever want someone to vent on, I am here, would be glad to have you as a friend.
    hey Kel, I am you have this awful disease ..you are so young.. I will keep you in my prayers.,.
    Like you, I've been running like crazy and am pooped. ;) Family visiting for 10 days and then poof* they're gone. The quiet is deafening but we're getting used to it. I do miss them though. I'm good! Notice more weakness in my hands and legs but so far so good. I think I'm going to try and get a leg brace this weekend. I trip a lot and fall occasionally.
    Cool wishes,
    Marta
    Helly Kel! Just thinking of you and hope you're doing well. Let me know so I don't worry about you.
    Hugs,
    Marta
    I do like your posts. You seem like a great young lady. I have been here a long time. And see a lot of my personality traits in you.. Glad you found us..
    Hey kel bel how was your holiday.Hope ur doing well and getting the support you need from loved ones.How are you feeling today.
    im doing ok, im not even close to being diagnosed just having some nuero symptoms.I just hope that if i ever do have to cross that bridge ill have the strength to do it.Like i said before i admire everyones strength on the forum.I hope you have a great memorial day weekend.
    hey kmendsley i was just checking on you to see how you were holding up and to say i admire your strength in dealing with your diagnosis.
    :) Yes, my signature is supposed to be longer too but, as you say, we can only take up so much space. I am doing well. Frustrated from time to time due to not being able to do the simple things I used to be able to do. But that's the nature of things now. The "New Normal" per se. All in all, life is good. xoxo!
    Hi Kel! Hope you're doing well this mornin! I love your signature. Where did you get it? xoxoxo!!
    Kel,
    I don't live too far from you. I don't know if you've heard about my foundation.... but ask around on the forum about us or go to ALSGuardianAngels.com. If there is ANYTHING we can do to help, call me at 949-233-3045.
    Stu
    Good morning Lovely! I struggle but no problems with breathing so far. I just fall and stumble and fumble and hobble and spill and drop. It's not too bad yet. I'm not sure how this all is going to play so don't have any firm ideas as to what I will and will not do yet.

    Yes, it's a kick in the chops isn't it? It puts a whole different color on the future. But we all start on the same line every day, no exceptions. Our job is to stay positive and as happy as we can and live each day to the fullest. That always has been our job. You and I and all here are just fortunate enough to realize this. We can love our loved ones "like there's no tomorrow". Our perspective clarifies the reality of that common phrase. That, truly, is life.

    Have a great day Kel! Sending good and loving thoughts your way! Huge hugs too. ;)
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