Recent content by kevinw

  1. kevinw

    Advance Directive Terminology

    Yeah, I'm only filling out paperwork at this point. I don't want to get ahead of myself here, just completing forms. But "Yes" I do listen to the Police/Fire/EMS scanner as a hobby and I do hear calls that go out to EMS that there's a DNR on file. So as long you take the proper steps 911 can...
  2. kevinw

    Advance Directive Terminology

    Hello Nikki & Karen...Exactly my problem. I "think" my wife/proxy understands my point of view of not wanting to be on a long term vent due to an ALS situation. But I have historically had high cholesterol and have taken medication for it since high school. Soooo, basically a cardiac event is...
  3. kevinw

    Advance Directive Terminology

    Hi Everyone...Not sure which thread to put this under so I will start here. I am seeking advice regarding how to phrase certain things within an Advance Directive / Living Will. My main concern is not to be on a long term ventilator due to a neurological condition. But I want to phrase it that...
  4. kevinw

    Not Accepting PLS Diagnosis

    Honestly it took me time to accept it also given the number of people diagnosed with it at any given time.
  5. kevinw

    New Medical Alert Option

    A possible new option for those that don't have a medical alert button and a landline phone. Also, a good option in case you fall outside... New Apple watch- Series 4 "...new watch can detect when you've taken a hard fall, and automatically call emergency services if you don't respond to the...
  6. kevinw

    What Happened Here?

    "Not ready"....a quote I use for just about everything that "would" help me, but I fight. Anyway, two braces with no cane to me sounds dangerous? When I use my two AFO's I tend to sometimes rock back on my heels and have to catch myself from falling backwards. Sounds strange but I go from fixing...
  7. kevinw

    What Happened Here?

    Unfortunately it appears as if the attempt to bring back the "old days" is not possible. Like you for my first two or three years I lived on this site and only had to keep hitting refresh during the day to read all the new comments. It was something to see back then, it was amazing. I don't...
  8. kevinw

    Great Weight Debate

    For the most part that's what I was attempting to say. That the changeover may have had some not so good things about it. So unfortunately some longtime members have disappeared. I agree "everything changes", but I was just trying to offer my opinion that maybe not all change is good...
  9. kevinw

    Great Weight Debate

    Sorry if I came across that way... I just re-read my post and all I was trying to say was that there are so many more sub-categories than years ago that people might be getting confused where to post. No harm meant (personally I don't have it in me to argue). But if you don't want me to...
  10. kevinw

    Great Weight Debate

    WARNING: Now I know I am going to upset people here with this post, so proceed with caution!!!! It is true that nothing stays the same, but that doesn't mean that change is needed. Maybe there are too many sub-forums within the ALS Forum website? That is just my thoughts on maybe the site has...
  11. kevinw

    Great Weight Debate

    I am 5'9" and averaged about 150-155lbs when diagnosed up until last year when I quit smoking. That was the only time I put on weight. Now I am hovering between 165-168lbs. But then again, in turn, I saw on the lab website were I get my blood work done that the cholesterol went up. Still not as...
  12. kevinw

    What Happened Here?

    I did question my neurologist that runs the ALS Hope Foundation in Philly what the percentage was, because of course I worried about it early on. And she stated "they have no idea". There are too many variables in play like was PLS the official diagnosis too early, I wish it was something they...
  13. kevinw

    Great Weight Debate

    I would love, love, love to accomplish your first sentence. Heck, I would write a book on how to do it. But, unfortunately I've had a cardiologist and been on statins since I was 16 (gunna be 45 in November, so what is that 28 years?). Long, long family history on my mothers side of high...
  14. kevinw

    What Happened Here?

    Nikki J....the problem with the exercise is not only the balance, but the stamina also. Because I would say about two years into it I had my neurologist at the clinic write for physical therapy. Now the clinic/hospital that I go to has a satellite physical therapy building five minutes from my...
  15. kevinw

    What Happened Here?

    Hi Nikki J :razz: ... I have read many of your posts and would never say that something is out of your knowledge...lol, you're great. Also, I kinda wish we were like Europe and just called it Motor Neuron Disease and not break it down sooo far that we micromanage our symptoms. Also, also...you...
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