1. KimT

    Happy Easter

    Yesterday, Good Friday, I was supposed to go to a 3 pm service. We had an issue in my wing of the condo and lost power from 8am to 4pm. I had to transfer all my groceries to the social room refrigerator and about 2pm we got hit with a very bad storm. I missed the service. There was another...
  2. V

    Husband is a possible carrier of c9 gene - anxiety over symptoms.

    Hi Everyone, My husband is 35 years old and has lost a cousin, an aunt, 2 uncles, (all to ALS) and currently watches his mom battle the final stages of ALS. His family carries the c9 gene. Upon visiting with his mom over Christmas (they live out of state) and spending a week surrounded by ALS...
  3. I

    Facial muscles

    I was diagnosed with progressive Bulbar Palsy I. January 2018. Although I could no longer swallow or speak by April of 2018, a PEG. helped and things were ok until Christmas of 2018. My limbs are weakening but I’m making the best of that. My biggest worry is my eyes. Even after sleeping well...
  4. KarenNWendyn

    Alexa for the technologically challenged

    I am not a techy person, but I do enjoy using my iPad. My hand function is declining. My speech is slightly slurred and nasally, but still understandable. A friend of mine gave me an Amazon “Fire HD 8 with Alexa”, 16gb, for Christmas. I’m embarrassed to say it’s still sitting on my shelf...
  5. I

    A question if you don't mind

    Background: I've seen PCP, I've Seen a Neurologist. I have been prescribed a blood test, and EEG and an EMG. The EMG is sort of on hold right now because we are having trouble finding a place that accepts my insurance. I presented to the ER 3 days after Christmas with a pain in my head and...
  6. Gmr8691

    Some very annoying symptoms.

    Earlier this year i ended up in the hospital with rhabdomyolisis brought on by a very underactive thyroid. Well ever since then i have felt like crap. Tinnitus, fatigue, unbalanced feeling and some other issues. Some days worse than others. This jas been going on since june 2018. On christmas...
  7. C

    Lost Dazed and Confused

    Hubby was diagnosed in Apr 2018. Had an accident in December and is no longer walking. Got the flu right after Christmas and was sicker than anything for 2 weeks. Took him to Dr. on Monday no fever, no HBP, said he was feeling good. Got him home from Dr. (we live almost 150 miles from VA)...
  8. 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...
  9. S

    Symptoms I have observed

    Hi, I have read the stickies regarding ALS and I admire the commitment of everyone who takes the time to answer all the questions. I am 63 years old male having retired from work last March and my general health is good, I have haemochromatosis (iron overload) which is well managed by my...
  10. Kristina1

    update on me

    I haven't posted in a while so I wanted to update. One of the main reasons I haven't been on here is... I'm writing a book! Or trying to. It has nothing to do with ALS or anything autobiographical. It's a scifi/fantasy romance. I've long been an avid fantasy reader, and always had stories of...

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