Recent content by jrtriggs

  1. J

    Tracheostomy

    Thanks for your response. It made me feel great. I hope the same thing happens to me, its the little things that can make a big difference in my attitude.
  2. J

    Tracheostomy

    I got the trach last week and the operation went well. Its nice to get rid of the mask. It has only been a week since the operation, but the fluid in my lungs seems excessive. Suction is often required. Do you think the fluids will reduce over time? Let me know your experience. Thanks
  3. J

    Neck brace

    I am walking with the aid of a walker, can't walk far so I'm using a mobile electric chair. We have ordered a larger chair which has a head brace/rest built in. The only brace I have used was a soft foam neck brace. I was never measured for a different type. I hope I am doing the right...
  4. J

    Neck brace

    I have bulbar ALS and have decided to get a tracheostomy next week. Now, my head hangs down from weak neck muscles. I have tried a couple neck braces, but never found one that didn't hurt my chin. Once I get the trach, I have been told that I can't allow my head to hang down. I'm looking for...
  5. J

    Breathing Anxiety

    Thanks for your thoughts and suggestions, they will help me develop my plan moving forward. The plan always changes as time passes....its kind of a moving target.
  6. J

    Breathing Anxiety

    I am not sure of my respiratory numbers, the doctor says that my lip seal around the tube would not be good so there is no need to run the test. I'm guessing about 35 to 40% lung capacity. I have tried the nasal pillows and my cheeks blow out. I guess i could try a trac for a while and when i...
  7. J

    Breathing Anxiety

    I have bulbar and was diagnosed 18 months ago at 60. I have no trouble walking or using my arms and have limited use of my hands, but they are still somewhat functional. I can't speak or eat and use a peg. I have been using the trilogy unit at night, but it seems my lungs have recently...
  8. J

    Clinic Visit and Memory Test

    My wife just read my reply and found numerous spelling errors. Too and surrounding. Oh well, I was always a poor speller.
  9. J

    Clinic Visit and Memory Test

    I would not worry to much about that test. The Dr asked me to come up with as many words beginning with the letter "F". I named 3 and quit. He kept timing me but I told him I didn't want to play any more. He also asked me to spell "world" and I spelled "would". I believe the atmosphere...
  10. J

    Fasciculations

    I am curious if anyone knows if the number of fasciculations relates to the disease progress? In other words, the more fasciculation the faster the disease is progressing. Some days I have a lot and other days less. There seems to be more if I exert myself.
  11. J

    Genervon - GM6 - An opportunity to communicate with the FDA

    Genervon GM 604 There was a lot of talk and interest in Genervon GM 604 including a petition for rapid FDA approval. Lately I have heard nothing and can't find anything on the internet. Anyone have insight, updates, or is it a stalemate between Genervon and the FDA?
  12. J

    over exertion

    Sporadic means random verses familial which means more than one person in the family has als.
  13. J

    Me too. I was diagnosed in Sept 2014 and can still drive, maybe we can meet and compare notes.

    Me too. I was diagnosed in Sept 2014 and can still drive, maybe we can meet and compare notes.
  14. J

    over exertion

    I am sure a lot of people that have sporadic ALS wonder what caused it. You can't help but wonder. I may have had a predisposition that I am unaware, but for me I believe it may have been caused by overexertion. As an example, working hard long hours all day in very hot conditions to...
  15. J

    BiPap

    Thanks for your reply. No, I was not tested lying down. Next Dr. visit I will look into that. I am waking up with headaches and feel fatigued. At this point I am trying to determine the cause of the headaches. Maybe meds
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