Recent content by lilblackhorse

  1. L

    Progression

    yes, hospice on board now. I have had trouble getting up out of bed for the last few days, and almost didn't make it off the couch yesterday. Right arm is going, which is the only decent appendage I had left at this point. It's freaking out all the friends who don't think it can go this quickly...
  2. L

    PALS roll call Wednesdays ( or whenever)

    still here, going quickly. diagnosed May of this year. Just got accepted to Hospice, and met with the prescribing doctor who can get me the Death With Dignity drugs by next week. Not ready to go yet, but I figure my legs will go in the next 3 weeks or so, left arm is not great, right one is...
  3. L

    Progression

    Re: PALS roll call Wednesdays ( or whenever) still here, going quickly. diagnosed May of this year. Just got accepted to Hospice, and met with the prescribing doctor who can get me the Death With Dignity drugs by next week. Not ready to go yet, but I figure my legs will go in the next 3 weeks...
  4. L

    Is it just me?

    So, I am all of technically 4 months into this, but I think it's more like 2 years.....but when I wake up in the morning lately it just seems that every morning I am worse. Seriously, how fast is this stupid disease supposed to go? Every day I find I am less able to do things. I am still...
  5. L

    Fighting, Not Giving Up

    ok, sorry about that--but the question still holds. Ever stationed in Lejeune?
  6. L

    Fighting, Not Giving Up

    so, question for you ex Marines...you ever stationed at Lejeune? I've been wondering about my diagnosis and why....my dad is very involved in the tainted water at Lejeune. In fact I lost a brother and mother to it, and my family is the first chapter in the book written about the contaminated...
  7. L

    Big Decision Made

    Hi NotBrad...nice to see another Oregonian here. I get what you are saying...it's the whole "line" thing. I'm new to this disease and how it treats people differently. If I had mobility and needed a tube for whatever, I'd probably be there. Me, I just go diagnosed and I'm way into this--losing...
  8. L

    Documents

    I have hit the ground running in the last 2 months, because I think I found out about my disease pretty late. I went to an estate attorney and I have put my house in a trust, and I have a pour over will. That way, any monies that come to me after my death will dump right into my estate with no...
  9. L

    Fighting, Not Giving Up

    I am new to this board, but I get it. I live in Oregon, and already am making plans to deal with end of life issues. I don't know where my line is, but lying in bed being that "functional vegetable" isn't on my agenda. As I've told a few people, I am a fighter too. I'd fight this stupid disease...
  10. L

    temperature issues

    ok, so good, it's not just me. Damn, I thought I was done with this. It's most frustrating at night, as I am having trouble turning over now, and I get stuck in the sheets and blankets trying to kick them off or pull them up.
  11. L

    temperature issues

    Ok, so I admit I'm a 53 year old woman, but menopause has come and gone......or so I thought. Does ALS screw with your thermostat? I ask because I am getting hot flash like symptoms and it's super annoying. I've had a lot of stress lately about work (all done now)....my other ALS symptoms seem...
  12. L

    driving

    i just got diagnosed in May--haven't even seen the specialist but this is moving fast. I am questioning my driving, have to go to a few appointments this next week, and then I think I'm done. My left leg is like a board. Losing dorsiflexion in my right now, and feel my reflexes are slower. Damn...
  13. L

    Here I am... (drug question)

    long story short, thought this was a work injury with foot drop after a fall back in Feb of last year. Leg continued to be weak but manageable. FF to a few months ago, feeling weaker and having twitches. Diagnosed with 2nd opinion just recently. I feel like this is going very fast--I just told...
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