VoiceforLinda
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  • Just stopping by to say, "hi". I am hoping all is well. My granddaughter, will be 11 months old on May first. WOW... Time flies. Would love to hear from you when you are able.
    Linda - Would you be willing to talk to a friend of mine about the diaphragm pacing surgery? He is scheduled for next week. Missy
    Hi LADY~~~ Have not heard from in in a while and was just wondering how you are??
    I am enjoying life as an OMA. My granddaughter was 9 months old on March1st!!! She gives so much joy to our family and to my PAL. Think of you often and hope you are ok.
    Hi, Linda- I haven't been on the forum in a very long time, and just now seeing your friend request.
    Be honored to have you as a friend! Hope you're doing as well as can be expected. Marianne
    My Christmas wish for you and your family is to live in Peace Harmony Laughter and Love and know how Beautiful You shine so bright with your Love and Light! I just want you know how much you mean to me ... we have never met in person, but you are known to me and stay in my heart. I feel we have been friends forever ....
    Ha ha, I think I got your relatives mixed up with Susan's. Although I still hope your family is okay :)
    Hi Linda,

    Just stopped by to say "Hi" I hope your family up in the NY area are okay after the storm. Drop me a note sometime,

    Diane xo
    Thanks for your kind support linda! I will keep at them until they give me dex, i wont give up!
    Love you much
    I am fighting this! The whole of als treat us now is fighting for me! We are sending letters to the fda and they say this is not possible that they can drop me from receiving dex. So there is hope on the horizon!
    Linda - I feel the pacer more strongly when I lay down flat also. Neuro wasn't surprised by this and worked with me to find settings that would feel ok while lying flat. Wish I could PM you. The irregular pattern doesn't seem right. Do you know your settings? Neuro at Cedars Sinai always prints them out for me. They set a specific BPM (breaths per minute) number. And a specific Inspiration Interval in seconds. For me it is 16 and 1.1, meaning I get a train of pulses lasting 1.1 seconds every 60/16=3.75 seconds. There is more DPS information at patientslikeme.com than here.
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