Recent content by BlsdMama

  1. BlsdMama

    Just finished second opinion appointment

    ((Hugs)) Our youngest is also six. PLS is a wait and see diagnosis.... that can be frustrating. Limbo isn’t a fun place to play but slow progression is a blessing for those of us with littles. I started my first diagnosis at almost exactly this time four years ago. I was never sure we’d make it...
  2. BlsdMama

    Pain in Limbs

    I am like your mother in that I have full sensation. As far as her discoloration -my ALS doc explained it like this: When your muscles and limbs are healthy, you have a lot of small movements - shifting weight, rotating your foot, small muscle movernenrs, etc and all of these things keep...
  3. BlsdMama

    PLS to ALS

    My apologies - I think I should have been clear - slow progressors with ALS tend to advance at a steady rate that they present and I've heard this from Mayo in Rochester.
  4. BlsdMama

    PLS to ALS

    Hugs - the waiting is hard. PLS is generally given as a "probable" diagnosis because they give us four years to convert to ALS before giving it as a permanent diagnosis. Most convert to ALS and a small percentage will stay PLS. It is usually confusing if it is a slow progression, but the...
  5. BlsdMama

    My PALS has become mean

    DeeDee, What you wrote resonated so deeply with me. Exactly this. All my plans and dreams for the future? Gone. I was hardest on my husband. I was so bent on “preparing” them for life without mom that I was being tough on them. And my husband and I parent very differently. I kept trying to...
  6. BlsdMama

    Duke trial

    Kim, I wonder if Mayo has reversed position on this. I requested a script for intramuscular methylcobalamin last week from Mayo. I have a different doc for this last clinic and he says he feels it has equal effect to Riluzole and certainly no harm, would be happy to write the script to have it...
  7. BlsdMama

    Looking for ways to slow Bulbar Onset ALS progression

    I'm no use to the OP, however, Don, you might want your doc to take a look for glycine receptor antibodies. I was first diagnosed at the U of I, but when I went to Mayo, they began an antibody hunt. They looked for GAD and for glycine receptor antibodies. I was positive and then they looked...
  8. BlsdMama

    Telemedicine Appointment today

    Thank you for posting. My first ALS Clinic with Mayo was scheduled for this coming week and is now tele-med. I'm not very enthused - I've been going to the U of Iowa ALS Clinic previous to this and had hopes for discussing things like trials... But, I appreciate that you shared it had value...
  9. BlsdMama

    Extra Wide Doors?

    When you needed larger doors, where did you find them? I don't want a barn door because it's for my bedroom and it won't work with the layout anyway. What I really need is a 40" pre-hung. Does anyone know if such a thing exists? I could probably do a 36" with no trim, but it's tight and right...
  10. BlsdMama

    Experience with USAA and accelerated death benefit?

    I’m not. My husband is the veteran. I was along for the ride. I posted here because with it being USAA, I figured a lot of our PALS used them for insurance and might have experience. For anyone else, I called them today and asked them to send me the forms. We’ll see.
  11. BlsdMama


    I know some of you understand these tests quite well. So FVC is my forced viral capacity - essentially what my lungs can hold and blow out? So it shows my lungs work well / hold a lot? Then MEP and MIP show force? Essentially they show the strength the diaphragm can exert to blow the air out? I...
  12. BlsdMama


    Looks like I was potentially not a limb onset. All that rib pain? Looks like my diaphragm isn’t in lovely shape. Sigh. Up at Mayo for the day. MIP and MEP values were bad - 28% and 38% respectively. But the FEV/FVC ratio was 85%. So why the bad results in one area but decent in the other? Can...
  13. BlsdMama

    Experience with USAA and accelerated death benefit?

    We have two policies - one through my husband’s work for $250k and another through USAA for $500k. The ADB through USAA has the 12 month stipulation. I was wondering if anyone has worked with them? I was diagnosed PLS shortly after getting the policy. I flipped to ALS in October via EMG. Headed...
  14. BlsdMama


    Ordered Christmas cards from Costco too this year. It will be the first time doing them since about 1998! ;) Good week this week. Took the kids to a real Christmas tree farm to cut down the tree. Fella had a Gator and drove me about. The older kids remember cutting a tree, but the littles only...
  15. BlsdMama

    Silly, but..

    I’m wondering how ya’all drive your chairs? My left hand is still perfect. So what’s special about the joystick?I'm very unaware. The very lovely PT gal from clinic sat in on my fitting and told him everything I might need. ;) She was incredibly helpful. I have the world’s most comfortable seat.