AfraidButNotAlone

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  • Hi Rob,
    I saw you haven't been on for a few days and was concerned. Praying for you my friend. Kim
    This is NOT a change in my approach to the DIHALSers. I'm just struggling (still), and as I am sure most of us (PALS) are, with some of the persistent posters.

    Why is it they are happy if we would agree with their self-diagnosis or their disagreement with at least one board certified doctor, but think we are bitter, nasty folks if we think they have anxiety issues....
    Hi Rob,
    Hope you are feeling a little bit better today. I read your post on the constipation. We see people in extreme pain come into ER with it. It's a miserable thing for sure. Hope some of the suggestions are helping you a bit. Just want you to know I think of you and othe other PALS/CALS on here often. If I can do anything ever to help you or your famiy please let me know. You are in my prayers. Kim
    Happy Birthday to you....... Happy Birthday to you.. Happy Birthday to you..... Cha Cha Cha
    Hi Rob,
    Thinking of you. My son and I did the ice bucket challenge yesterday. Several family members and friends are doing it in honor of dad. Praying for you. Kim
    Hi Rob,
    Hope things are going ok with you and your family. I had a nice visit with my dad in Dallas. I actually thought he looked better then he did when we saw him at Christmas. But, he was just getting over a cold then as well. He hasn't really progressed too much since then. We were able to take him out to eat 3x's while I was there and then my boys were there for 3 days after me. They took him out to see a movie and he went over to my brother's house and relaxed by his pool while the boys swam and they all had pizza. Dad is hoping to get a van soon through the VA. It is so hard to transfer him now without it. Take care, Kim
    Hi Rob,
    Just checking in with you. How are things going? I've been working quite a bit and starting to get a little burnt out. But, the money will help out when I go visit dad on June 9th in Dallas. My daughter and I are taking a train out of St. Louis. We will be making a decision real soon as to rather we will be flying home or returning by train. It's a two hour drive from our home to St. Louis. How are you tolerating the Riluzole? Take care, Kim
    Hi Rob,
    Please keep me posted on how you are doing with the Riluzole. Dad is debating as to get back on it or not. Hope you have a nice weekend. Kim
    Hi Rob,
    I didn't comment on your social security thread because I know nothing about how it works. I know in our town we have Catholic charities that helps people out temporarily with food and bills. I think one's social security sets in you get some back pay but I'm not sure. Can any family members help you out temporarily. You don't need this stress on top of everything else. Makes me so frustrated with the damn system. People that need help can't get it and the people that do get help often abuse it. I love especially when people will go out and get a brand new tattoo or beer when they are struggling to feed their kids. You will be in my thoughts and prayers. Kim
    Hi Rob,
    Happy Easter! I'm here at work looking at the beautiful sunshine while I'm stuck in here. lol But, I do like the holiday pay. But, that greedy Uncle Sam likes to take alot of it. lol Take care, Kim
    Happy April Fool's Day,
    Beware of pranksters today. My dad doesn't really know if the trial is helping or not. But, he has no side affects and they just checked him last week and he hasn't had any more progression. So, I think it is helping. I don't think it's our cure yet but I think it slows things down.
    I am having trouble with my teenage twins who are beyond disrespectful to me. I try to take priviledges away but they don't drive anywhere and don't do much. I told my daughter she can't use my cell phone until she straightens up. It really hurts me alot. Otherwise, I'm taking good care of myself and am managing my depression much better. Dad is planning to come home for at least awhile. I'm waiting to use my vacation days then. Take care, Kim
    Hi Rob,
    So sorry to hear about you being blown over. Glad you weren't injured. I'm sure the paramedics were glad to help out. It wouldn't have helped you with your situation with the wind but please get yourself a walker and use it. You can't risk having a major fall. Dad had several horrific falls where his legs would just buckle up before he was diagnosed. Luckily, he never broke anything. He only walks short distances now like to the bathroom using a walker and always with a person directly behind him holding on to his gait belt firmly. You must get one and ask them how to properly use it. Hope this week is better for you. Hugs, Kim
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