Recent content by southern lady

  1. S

    Neck Question

    Weak neck muscles My neck muscles have weakened to the point that I use soft brace if sitting up right for very long. The worse thing is when care-givers are careless in transportation or trannsfer & let it flop backwardss! Panic --I can"t breathe. Used to grab hair to pull neck back...
  2. S

    The Holidays

    I won't be eating or talking This is my 2nd or 3rd Thanksgiving with ALS (symptoms in04, but diagnosed Mar 05). It is different when the Grandmother of the clan can't eat or talk, but I get to be hostess. I haved prayed that God will fill our hearts & home with joy and praise & draw us closer...
  3. S

    Eric Edney and Even Better Now - Don't Be Fooled By This Scam

    Danny, false hope may be better than no hope Danny I'm not into Eric Edney, but if it encouraged your Mom in any way, good for you in trying to help her. I don't criticize what pathways any one takes. I know of people who went to China for stem cell treatment; it didn't work, but I don't blame...
  4. S

    Bulbar Als Diagnosis

    Bulbar ALS I was having slurred speech; went to nuerologist who did emg & one week later, I got the diagnosis. My tongue quivered like a bowl of jello. If I sneezed suddenly, would bite right through it. (diagnosed Mar 05). We went to Denver for 2nd opinion, but he didn't even run tests...
  5. S

    *New To The Forums*

    Husband hears cries in the night For weeks Billy kept running to look in on me, thought he heard me calling him. I figured it was anxiety, so relented & let him sleep with me. Then I started hearing strange noises in the night. My startle reflex is on overdrive & whenever the rhino would...
  6. S

    Turned down for trial

    Drug Cocktail I found s study from Canada that a cocktail of rilutek, minocycline & nimotop together were more effective than either by itself.. I still here, but hard to say how I would be without treatment. My insura nce pays for it, so I will continue. Time for bed, love Mollye
  7. S

    *Have ALS-Getting Married*

    Go for it Holly! tRUE LOVE IS RARE & PRECIOUS. We have been married 47 yrs. & my diagnosed has only deepened our passion for each other. I'll share more about that latter. Bedtime now. Best wishes, Love, Mollye
  8. S

    After Dx, what is the first step in planning?

    Finances permitting, do the things you were going to do All of a sudden our "someday" list becomes do it now. Don't panic; all the other stuff will get done. Resolve to live & love one day at a time. My husband & I had a wonderful trip to Yellowstone, creating memories that we still draw on...
  9. S

    Advice about feeding tubes

    Attitude better I knew I had to get over the anger. I'm better today. Can lie quietly while he feeds me a can of pulmonaid through tube then goes to enjoy crabmeat au gratin. Even let sitter stay last night without pitching fit. (When u can't talk, fit consists of writing large words on...
  10. S

    Advice about feeding tubes

    From simple procedure to emergency surgery... Maybe I shouldn't tell you PALS this, but you asked how it went. Checked in Wed. to have tube put in, to go home next day. Very eminent, experienced gastro-entorologist did surgery. Woke up in excruciating pain. Said probably leaked air or...
  11. S


    Greetings from L.A.(lower Alabama!) Hi, Buffalooney. how's the world treating you? It is hot here, but yesterday I was having a kinda' good day & decided to do some yard work in my borrowed Jazzy scooter. I wrapped new growth on running roses around fence, pulled dead stalks on day...
  12. S

    Advice about feeding tubes

    Another beautiful day! I need input from my PALS. How do you know when to get a feeding tube. Those who have them: is the quality of your life better with one? I don't know if I'm being stubborn by not getting one, stupid to risk aspiration, or bravely trying to hold on to a shred of...
  13. S

    massage, electro muscle stimulation etc.

    Electrical Stimulation Twice I have gone thru Vital Stim treatments to strengthen my throat muscles. It has kept me eating & able to swallow even large pills & postponed feeding tube. When they ran swallowing test after treatments, they were estatic. They no one with ALS ever shows...
  14. S

    Handicapped Accessiblity

    The Invisible Woman Your observations match what I have experienced since I have to use a chair. People not only fail to yield & give you a passageway, they walk right in front of you like you aren't even there! Forget help with doors. Support group told me to buy rubber door stop to hold...
  15. S

    Hello Everyone

    Only one approved drug Dear littleheart. I think your name should be big heart! Most nuerologists do not come across as warm & caring. Mine immediately started talking to me about wheel chairs & feeding tubes. (I'm still eating & walking, but not very well.) They also advise you that there...