1. affected

    Cough assist

    These are almost unknown for ALS in Australia. I have a friend PALS who needs one and they are being told that you must have diaphragm strength and they are only a very short term solution. The PALS is having some distressing episodes where he cannot cough and I'm unable to get any help...
  2. E

    Here for an opinion

    First, I want to thank all the contributors to this forum especially PALS/CALS. I do recognize that your time is valuable. Yet, you devote so much time to helping others (a large percentage of people that don't have anything that remotely resembles ALS) which is truly remarkable. About 10...
  3. L

    lung capacity

    Lungs are going down fast. Is here anything that can be done to strengthen the diaphragm or increase lung capacity or slow the loss of capacity/function? I was told not to exercise on a powerlung as that would cause muscles to weaken further.
  4. J

    MND timescales or other neuro issues?

    Good morning all, It’s a little advise I’m seeking as all the doc’s I’ve seen and test done have drawn a blank, but the fact remains, my condition is getting worst? I'm not sure what I have but I'm thinking its got to be a nero issue as everything else it coming back as clear, but I'm still...
  5. tripete

    Things that you do not hear about ALS

    In June of 2016 I posted a thread about Pain in ALS and how the "experts" tell us that ALS, as defined by the dying/malfunctioning of our motor neurons, is not painful. As time has progressed I have found many other things that "they" tell us are not issues that are. Like Smell, Bathroom...
  6. kevinw

    Great Weight Debate

    Okay, everyone suggested starting a topic…so let’s try it. What is everybody’s doctor telling him or her about his or her weight? For the past ten years I have been going to the same ALS clinic and seeing the same team. From the start I was informed to maintain and gain weight if possible, “take...
  7. B

    Satchurated Oxygen

    My 02 level has been tanking over the last few months. I thought the reason I was so foggy and lethargic was cuz of my meds. About two weeks ago I had a light go of in my head and decided to break out the oximeter. Much to my chagrin it displayed 80, I almost sh!t my nickers. I had been...
  8. S

    Hi .Update and advice please.

    Hi I have been a regular poster on here and am still in limbo after 18 months. Yesterday after seeing my pulmonolgist my fvc was lower than ever 3.9. My sniff test was very good though 138. The sniff relates to the diaphragm so again this has confused everyone. I remember though violent...
  9. D

    Improvement in ALS??

    Hello friends My father was diagnosed with MND in April 2016 having weakness in hands and diaphragm. He later also tested positive for Lyme's and was given doxy. We saw some improvement but then his condition started getting worse. In August he had respiratory failure and was on ventilator...
  10. P

    New member

    I currently have a probable diagnosis if I understand it all correctly that's the second highest level of diagnosis. My doctors first found my diaphragm to be partially paralyzed in Dec 16 suspecting an injury from a car wreck some years back. After seeing a number of doctors I was sent to a...