progression

  1. K

    FVC at diagnosis and progression rate

    My mom’s FVC was 50% during her initial respiratory evaluation at the ALS Clinic at Mayo. Because of this, she is not a candidate for any clinical trials. She will be receiving a cough assist and trilogy. Does her diminished pulmonary function indicate ALS progression is aggressive? She is...
  2. T

    Dad Dancing Again in Heaven

    My Dad slipped away peacefully on Wednesday, Jan. 30. ALS took his ability to move, to swallow, to speak, and finally to breathe, but it didn't take his joy or his strong faith. Diagnosis was the end of December 2017, though he'd had symptoms for at least two years prior. Possibly...
  3. K

    Also...Slow or Fast Progression?

    Karen, I must admit I am wondering the same thing...slow, fast, average? I know today is a gift, we should live each day and day by day, but my wondering has to do with decisions that need to be made. My PALS was diagnosed in January 2018 with symptoms becoming very noticeable in August 2017...
  4. K

    Slow or fast progression?

    Hi All, My dad was officially diagnosed with als in March 2018 although he was exhibiting signs as early as May 2017. I remember going to the neurologist for the diagnosis and my dad walked there. Slowly but he walked. Now he can barely walk in a walker. His left side is much stronger than his...
  5. M

    Likely Not ALS - that's good news!

    2 prior EMGs (Nov & Dec) with neurologist #1 noted chronic denervation, resulting in a "Possible ALS" diagnosis. First EMG (Aug) did not show any issues. Dr #1 was clear that lack of muscle weakness/atrophy after 9 mos of continuous fasciculations and cramping was encouraging. Next EMG in 3...
  6. S

    Genetic testing??

    My husband was dx. In dec. 18 we have very little past family history due to the fact that his maternal grandfather was adopted with no records and his paternal family have all died at young ages ( under 50) except for his father as of now who is 48. Reed is 28 and I am just curious if we...
  7. I

    Drugs and PT for PBP?

    I was diagnosed with PBP a year ago this week. I frequently check in and read most of the posts for the day. It just dawned on my husband and I that none of the four neurologists I have seen have mentioned physical therapy or drugs that might delay the progression of this beast. Until about...
  8. B

    MIL Diagnosed

    My MIL started showing symptoms in June 2018. It started with back pain and slurred speech and progressed from there. In August she needed a cane to walk, and by September a walker. We had began seeking answers from her PCP and a Neurologist who couldn't give us any answers. The only thing...
  9. A

    Depressed

    Having a difficult day. More progression and the grief that goes with every loss is hard to deal with. I know I m depressed but I m still handling everything. My pals depends on me and I want to be strong for him, and be the caregiver he deserves. I m frightened and overwhelmed, it is all...
  10. K

    Sorry to find myself here but glad I found you

    Finally, here. I have been a longtime lurker. I have been tempted to ask questions, but ultimately I decided to wait. And I waited for a long time. Having been finally diagnosed, I will let you know how everything began. In the spring of 2016, I started noticing some problems with my left...
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