respiratory onset

  1. M

    A delayed introduction

    Hello All, I want to first say thank you for taking the time to read this post. I have avoided posting here for about 1 year but due to changes recently I have decided, still with some hesitation, to post. I was going to write more of my history but I do not want to take up your time any more...
  2. P

    support for children and grandchildren of PALS

    I was personally very grateful to see a camp offerred to the minor children and grandchildren of PALS. As a CALS I was overwhelmed with gratitude when I saw the notice. Just wonderful, I thought, I wept and sent the notice on to my daughters in law who might want to participate with our...
  3. M

    Question about NIPPV machine

    My dad has respiratory onset ALS diagnosed in May 2017, he still has full use of his hands and his speech and swallow are only minimally affected but he is really really weak can only walk assisted for 2 or 3 steps so he has a power wheelchair for getting around. At first he would only need...
  4. 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...
  5. M

    Link with OCD and ALS??

    My dad was diagnosed with ALS a year ago, he has respiratory onset. Although he uses a NIPPV up to 20 hours a day and needs a motorised wheelchair for anything longer than a few steps he's actually doing ok considering the prognosis last year, a year later he still can eat and drink what he...
  6. T

    Could I have respiratory onset als?

    Hi everyone my name is jake and I’m 28 years old. My symptoms started over 2 years ago with random twitching and mild breathing issues. This past year my breathing has declined a lot. I’ve had a full cardiac and pulmonary work up all normal except pft showing restriction. I then saw a...
  7. C

    Respiratory Onset- Update

    Thought I would give status on my husband for those few with this ALS type. After 10 months of tests, his final diagnosis was July 2017. He is weakening and hasn’t left house for several months. Just better since breathing is very tough. He is on trilogy 18 hours a day. A blessing that...
  8. C

    Respiratory onset?

    Hello everyone, I know from my title I picked the rarest of the rare to worry over, and I’m sorry ahead of time if come off as someone with just health anxiety. I don’t mean to waste no ones time here especially those who are suffering from this terrible disease. My prayers go out to all of...
  9. I

    I believe I have respiratory onset ALS

    Hi everyone Try to make long story somewhat short. It started after 10 day long flue-like symptoms in aug. Followed by left-sided chest pain and then breathlessness at exertion. Pain subsided and my breathing issues has stablized somewhat. I have to sleep with inclined bed to not wake up of...
  10. S

    Respiratory onset?

    Hello, I am 18 years old from India. My symptom is breathing problem. When I lie down I don't inhale properly, like shallow breathing because of this I can't fall asleep. I feel anxious. Sometimes I feel my head isn't getting blood. My lungs feel weak, I run out of breath while talking easily. I...
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