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  1. K

    Optimal living situation- financially, emotionally, spiritually etc

    My pALS is my mom. She is newly diagnosed with bulbar onset ALS. As of now her mobility is not impacted too much, just her speech, swallowing and breathing. We have been discussing living arrangements as her mobility and breathing decline. Other pALS out there, what did you decide? Did you...
  2. 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...
  3. K

    Jacksonville Florida; UF Shands or Mayo ALS Clinic

    Kim, Thanks again for your guidance and encouragement. My mother (ALS dx 1.2.19 from Dr. Lucey in Fernandina, FL) has her “second opinion” evaluation at Mayo (Jacksonville) on January 30, 2019. Do you have any other helpful information regarding this first appointment? We were advised it...
  4. K

    Jacksonville Florida; UF Shands or Mayo ALS Clinic

    Thank you Kim T. I’m learning it may not be possible to get into Mayo utilizing Medicare part B benefit. I’m trying to find more information. I really appreciate your insite. As of now initial appointment is February 26, 2019 at UF/Shands. Thanks again.
  5. K

    Jacksonville Florida; UF Shands or Mayo ALS Clinic

    I’m looking for pros and cons for the UF Shands and Mayo ALS Clinics in Jacksonville, FL. Any input is greatly appreciated. Thank you very much.