Atsugi
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  • Merry Christmas Mike! I am at work now working the midnight shift at our hospital on the switchboard. I had a nice Christmas Eve with my family and aunt tonight. I miss my dad terribly and am having a hard time dealing with it. I kind of had a breakdown earlier in the week and the doctor had to put me on some pretty strong meds. I knew dad was naturally going to survive ALS but his end came so quick. He had Hospice for less then 24 hours. I was in shock. But, I'm glad he didn't linger at the end. Hope all is well with you. Take care, Kim
    My neck shoulder and arm on fire and it getting harder to do things is that not a symptom of the als? Or cramping sore hands and the stiffness sorry I know I anxious I just never had this before
    Hello Atsugi thank you for responses I have been to doctor lot of times he can't find the cause and neuro wants to follow up so that scare me I've read ALS cases of people having burning muscle fatigue and stiffness in ALS that why I worry and I had lot of things ruled out sorry for grammar my English is not so good
    So if I misunderstood, and I think I may have, that there really are just a small number of people here trying to help out those with the disease and it wasn't intended to be an open forum for these types of questions then I sincerely apologize. I don't want to take up your time or anyone else's that are trying to help people in need and explains why I feel like every response is intended to encourage me to leave (which to be honest led to more defensiveness). So I'm sorry that I took up so much time and I'll definitely let the forums rest until there is a real need to use it again (which I hope never comes). :)

    Thanks for your graciousness Mike... I can be a pain... I mean well.. but I can be a pain! :)
    Really my reason for joining was just to get more information so my first post was intended to be an introduction but in hindsight should have kept that to myself. My second post was a question regarding atrophy as I wasn't familiar with how it looks in early stages (most sites show full atrophy) but again the intent was to learn how people recognize atrophy and used my own images for example.

    But that was the point that I started feeling push back from moderators which put me on the defensive. I'm really not interested in having anyone on the internet diagnose me. :) I don't spend a lot of time worrying that I have the disease but things that reassure me when symptoms arise is knowledge of the disease.
    Mike, I definitely did miss that rule. Since reading that I went back to both the DIHALS and General forums and back through each of those stickies and I can't find that rule. Could you point me to that resource so that I can read through it.

    Your reasoning is completely understandable. I would not want people who have the disease to have to filter through piles of questions from people that do not.

    So is this site intended for people to learn about the disease? I get the DIHALS for people who think they might have it to be reassured that they likely do not. But as I read your post and I guess the more that I've interacted here, there are very few people who respond.. Mainly you, Laurie, Tillie, and Nikki and assuming you're also all moderators. So is this site just intended for helping those who have the disease?
    I had a feeling that you would but why is the question. I checked the rules, I didn't see any conflict with posting there. The post has nothing to do with my personal symptoms and quite intentionally. I'm trying to learn about the disease and I don't want it linked to my own personal trials. I also don't want it to be read through the lens of someone who is obsessed with having the disease... which I am not. I don't see the harm in posting there and respectfully request it be placed back into the original forum in it's own thread for others to gain value from as well. What I posted is general discussion and that in my opinion is where it belongs. You guys are the moderators so the final say is yours but this doesn't seem necessary, appropriate or helpful to anyone.
    Your next response missed the most significant part of the message below which is utilizing off the shelf technology available today. No need for venture capital, no need for millions of dollars or outside management. Some of these things I have already implemented within a few hours of effort costing about $30 for a link hub and switch and using my existing smart phone. If it weren't cheap it wouldn't have a chance.

    To be successful it would take people with a passion for helping people. There are significant collaboration tools available today utilizing the agile development process where you break big solutions into much smaller pieces that can be implemented by anyone, anywhere (including a student who only has 6 months in a semester). The goal is not to do everything at once, but to accomplish many small things together to build up the overall solution.

    Finally, I don't need you to have connections to this industry because I have access to the industry. I work in it. :)
    Mike, please tell me you don't believe this. You just characterized all students as quitters who can't follow through on a task and then lumped interns into the same category. That's really not a fair thing to say is it? So a couple of things, I've seen what these students have already accomplished and it's astounding. They're very talented and at that age still believe they can change the world! Second I did not say interns... these are cream of the crop college grads who are fully employed by our company. They are in no way interns or temporary they are the future leaders of our organization and about as smart as they come. I sat through a demo today that made my jaw drop. Extremely talented.
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