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  • Users: Fusia
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  1. Fusia

    Another white flag…

    After a lot of introspection over the last few weeks, I have come to realize there is no more benefit to me in my struggle against ALS - my life these days could really be called breathing rather than living. This is not how I want to live my life. I have decided that I will take my prescribed...
  2. Fusia

    Diagnosed 4 days ago

    Laura, I am very sorry you're here. But, this is a great place for finding information, getting questions answered, connecting with some wonderful people. I also live alone and have found this site to be a tremendous help. I was diagnosed just over two years ago, with limb onset. I still have a...
  3. Fusia

    Using Alexa device to make outgoing calls

    I have almost no use of my hands and arms at this point, but my voice is still fairly strong. I use the Voice Control accessibility feature on the Apple iPhone and iPad quite extensively. The one big issue I've run into is that when making outgoing calls, Voice Control stops listening after the...
  4. Fusia

    PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

    I've missed several weeks of posting, too. Not much to report, but also, I've had LOTS out of town visitors over the last several months - it's been wonderful spending time with friends, but exhausting at the same time. And, I never seem to get much done when I have visitors staying with me -...
  5. Fusia

    Very scared please help.

    I'm going to say something here that is a little off topic from your questions, but it just bothers me… You mentioned that you had gone to the ER to have some tests run. This is really not a good use of ER resources (especially during Covid), and it is one contributing factor to the high cost of...
  6. Fusia

    Power Wheelchair - steering

    The techniques are quite different between a front-wheel drive and mid-wheel drive. On a front wheel drive, when turning a corner, you need to hug the corner on the side you are turning towards before starting the turn so there is room for the back caster wheels to swing around. To make that...
  7. Fusia

    Muscle Fatigue/Weakness throughout body

    No, not until very late stage of the disease when very little muscle remains.
  8. Fusia

    Dad Diagnosed

    I'm sorry to welcome you here and very sorry to hear about your dad. I was diagnosed in August 2019, with the first symptom in August 2018. My husband died six weeks after I was diagnosed, so I live alone and depend on some paid caregivers for the assistance I need. At this point, I have very...
  9. Fusia

    PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

    Kevin, I guess I will be the first PALS today to bring you some joy…😊 I'm so happy to hear that you still can manage everything without assistance! I'm glad to say the heat has broken here in my area of Montana – we actually had quite a bit of rain last weekend and the temps are now in the low...
  10. Fusia

    Teeth Grinding

    I was diagnosed with ALS in August 2019, with symptoms appearing one year prior to that. There was a time sometime after the diagnosis when I noticed I was clenching my jaw and grinding my teeth at night - I suspect it was stress over the situation and the fact that moving in bed was getting...