1. R

    ALS...Bulbar ALS concerns

    Let me just start with saying my heart goes out to all that has been affected by this terrible disease. The reason that I am here is that I have been going through some disturbing changes over the last few months and I would like to get everyone’s opinion on my symptoms. I have written down my...
  2. ReneeM

    What we were told about Hospice at the clinic

    Yesterday, my husband went to his first clinic. It is a MDA/ALS clinic in southeast Michigan. Everyone was very nice and kind and my husband did feel better after hearing everyone evaluate him. I brought up the subject of Hospice because I see him going downhill very fast. And since I work...
  3. G

    Our Life from a Daughters Perspective

    My family has lived a very long with this disease. My husband was first diagnosed with PLS, then later ALS. He has been reevaluated several different times with different doctors. They all concur that the diagnoses is ALS. In some ways he has symptoms of both. The progression has been much too...
  4. notme

    Where is the ALSA and MDA?

    Ok Each year, tons of money is donated to the MDA association. Where's it going? It's not going to a great PAL here in another state with no local ALSA and no power chair she needs. It's not going to the PALS that have no communication devices and are typing with one finger it's not going...
  5. K

    Have a Neurodegenerative disease...now which one is it?

    I was told this last week from the dr. Said I definately had a neurodegenerative disease but didn't know which one it was just yet. It hit me today for some reason...I couldn't tell you why..There wasn't an instance where I couldn't do something...work was realtively horrible as it usually...
  6. twinmommie72

    Help me understand

    If the cause has been identified, why doesn't the FDA fast track a treatment? Why am I hearing "maybe" a treatment will be found in 2030? I have made peace with my diagnosis & the cure may not arrive to save me. Just help me understand why why why aren't they working around the clock to knock...
  7. S

    New to the forum

    Hello everyone! My name is Scott and my wife tells me this is an awesome forum to be a part of. I'm not sure if I'm ready for this because other then an afo on my left leg, my life has'nt changed much. I still work full time and fish bass tournaments on the weekends! I'm not hiding from the fact...
  8. K


    A Troll found my inbox...meh...tired of hearing their constantly changing story. Why does she thinK i want to hear the whole thing again in my inbox? Wish there was a block button or something...:?