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  • Iam happy to hear from you and to know that my message was of some comfort.

    We are coming upto 2 years now and it seems impossible that our Ed has been "gone" /at peace for that long and yet only yesterday since he passed in other ways.

    This forum is so wonderful to be able to tap into on occassions like this morning when I have woken early and need 'someone ' to 'chat' with.I hope you continue to find it so.

    Be great to hear how you are doing if you would like to share and please know some one cares!

    Take care,Anastaia.
    Thanks Blue,

    Wouldn't it be nice if some multi-billionaire donated enough research money to ALS? Here's a wild concept; how about the State lotteries paying off once a year to ALS research, etc. But what I'm hoping for is that some real research will come out of her peer group. I feel sure that it will. Stay tuned, Steve
    Hi Blue,

    Nice to hear from you. Sorry for your loss. My wife also passed on Sept. 1st. This is such a monster. I guess we know what our new 'cause' is, now don't we? I am going to do all I can to promote ALS awareness. As my MNL used to say, 'this can't go on!'. We must find the cause and some reasonable treatment, and/or a cure someday. Please stay in touch, Steve
    Yeah. Because THAT'S what she needs on top of ALS... drug reactions! Ugh. I'm glad it worked out!

    I'm not my mom's day to day caregiver (they live about an hour and a half away). I was there last weekend though. It's weird for me in a way. Almost like I've forgotten how she was before ALS. I was playing a video clip of her reading to my daughter, just 2 years ago, and it hit me like a ton of bricks. I had literally forgotten how her voice sounded. Her laugh. How bubbly she was. How she effortlessly swung my daughter up into her lap, and now she can barely hug her. My dad and I both suffer from general anxiety anyway, so we are a mess on a hot plate these days. :-/
    Hi Blue,

    I am following your posts, and I am so proud of you! Sometimes you just have to stand up for yourself, as you so properly advised designdiva. Kudos to you! I love your spunk!

    Hang tough,
    Steve
    Hi Blue,

    Thanks. Yes we are doing as well as can be expected. I am finding out that the older members are exactly right when they say you have to keep adjusting. This 'journey' is filled with twists and turns, nothing is set in stone, it seems, except the inevitable......which sucks.

    But if there is a bright side to it, it's the fact that life is enhanced from the moment you get that diagnosis. Once you get over the initial devastation, you begin to realize that each remaining moment is precious, and therefore everything changes. Most things are not as important as they used to seem, and other things take a much higher priority.

    I am glad you found us here, and have received some help. It is a long road, but we are all here together. Please allow me and the others to help when we can, and we may lean on you from time to time.

    Remember the line from the old Beatles song 'we get by with a little help from our friends'. Nothing could be truer in this 'club'.

    Cheers,
    Steve
    Thanks Blue.. Right now in Panama, we are in rainy season. I have been working and recently just got back to college since i wanted to get a Master degree..

    About the diagnosed, well it has been a roller coaster because my neuro & neurofisiologists that put me through EMG concluded i had S1 root irritation bilateral.. which is located in lower back.. They didn't put attention to my calves. I have too carpal and cubital tunnel syndromes.. which can make forearms and hands weak... that's pretty much about it.. my blood test at first were pointing to an autoimune diseases but now i did other blood tests that dont really show anything....

    For instance, i guess i don't meet the criteria.. i'm about to post a thread on Is this ALS just to give some insights in my case...

    Thanks again Blue and your mother too ;)

    Jon
    Thanks Blue! This disease is so messed up. Straight from the Devil himself. :( I hope your mom is doing well today.
    Hi Blue,

    I can't really tell you much about getting the chores done except this: obviously, you just have to do them. Period. But, when I was working (lifetime electrician), one of the best tips I ever got was; 'do all you can while you're in one spot'. Part B of that tip was; 'finish a room and close the door behind you' (for residential work).

    I have used that first 'rule' most of my life, for everything. If I'm doing house work or yard work, any chore of any kind, I have that thought in mind. 'Do all you can while you're in one spot'. You will be amazed at how much that will help you think about what you are doing, and whether or not there is anything else you can do 'here', if not, move on.

    Hope that helps,
    Steve
    You're welcome. I am a high school teacher. I use to teach in the face to face class and now teach online. I have found over the years there are ways of saying what you need to without being hurtful to others. I also agree with you - most people we have in our lives are good and helpful. It is the few that seem to bug us and that is what sticks. Most of my students are great, only a few are ever a problem but if you hear me talk you would think they are all a pain. I guess we just seem to focus on the ones that affect us the deepest. I love your plan!!! I wish you best in taking care of your mom. I know she loves it!
    Thanks BlueK58, indeed scary... i'm trying to relax but it's hard... being in this limbo before definitive diagnosis is tough...
    Hi Blue58,

    Good!!!! That sounds better. I just would not put up with anything like that. This disease is enough! People just don't understand, and if they can't learn, then......you just have to do what you have to do.

    I'm glad you're standing up for yourself, and I hope your brother and father are supporting you, sounds like they are. Too many challenges for 'stupid' to be in the picture.

    I wish you the best, and please keep me in the loop,

    Steve
    Hi BlueK58,

    I read your posts, and I must say that if I were anywhere close, I would have those people straightened out pronto!!! Of course, I'm an older guy, and you're a young, respectful woman. I try to be respectful too, but I have low tolerance for 'stupid' and 'inconsiderate'!

    I would lay down the law, that if these comments were not curtailed, visiting privileges would be denied.....on the grounds that your mother is deathly ill, and you (and your brother) as the caregivers, are making the best decisions you can.

    It is in your power to determine who can see your mother, aunt or no aunt. Family member or no family member! If they can't show some respect and consideration for your mother and for you as caregivers, then you don't need their gruff!

    Just my two cents worth,

    Hang tough,
    Steve
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