Recent content by Firefly

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    PALS roll call Wednesdays (or whenever) PALS ONLY PLEASE

    Hi everyone, I hope you're all doing well. got a PEG 1 month ago. I don't like it but know it was a wise decision.
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    Taking various types of medications with a peg tube

    Firefighter, I'm also curious. Can you share with us how you're now able to eat regular meals? Thank you.
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    Thank you Laurie, I'm keeping my fingers crossed.
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    Hi everyone, I had my 3 month clinic visit today. I asked my neurologist what he felt the chances of Edaravone being approved this June were. He stated it has been approved and he had already contacted our pharmacy to start the process of getting it on our formulary. I questioned him on...
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    The black cat analogy is perfect!
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    My CRP was apparently just enough to qualify me for the trial. The coordinator said that was actually good news as those with low levels tend to progress slower. Hmmmm....not so sure about that. We'll see.
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    Respiratory Weakness Early- Typical Path

    Thank you for sharing. It was very encouraging. :)
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    I'm currently in the Np001 trial. I will have my 5th of 6th infusion the 1st of March. Unfortunately, I have not noticed any benefits. I took a fall Christmas Eve and fractured my ankle then fell on my church steps about a month ago. Ironically, neither of these falls were ALS related, (go...
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    PALS roll call Wednesdays (or whenever) PALS ONLY PLEASE

    Re: PALS roll call Wednesdays ( or whenever) I'm still here, trying to adjust to the never ending changes.:?
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    Suffocation & choking

    Thank you all for your words of wisdom, experiences and suggestions on this topic. It has been my biggest fear also due to bulbar onset. I drove myself to ER in April because I thought I had choked on a cookie. Of course, I was seen and released as that is not what happened, beside the fact that...
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    Unexpected weekend activity!

    Oh my goodness Nikki, I hope all 4 issues will prove to be resolvable in some way. Good for you for listening to your body and seeking medical help. Ironic none of the issues are MND related. I'm sending you good thoughts and warm hugs. Debbie
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    Acute Sense of Smell

    Yes, I experience this on a regular basis now. I've asked my Neurologist and Pulmonologist about this. They did not have an answer?? I have a heightened sense of smell. Certain smells are so strong, I temporarily feel like I can't breath. Cooking smells, fireplaces, BBQ's, I even walked into...
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    Excessive saliva

    Thank you. I'm going to try that!
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    Thank you. I got your visitor message I tried to reply but didn't see a reply button. P.S. that's hilarious about the promise to turn men into demigods. Lol.
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    Dr. Bedlack and Lunasin.

    Thank you Ed. :)