• Eric Jensen

    February 9, 2023 at 8:44 am

    I have an EMG and then an in person, visit follow up. I am also working on getting my BiPap. I am ready to have a good night’s sleep.

    • Dagmar

      February 9, 2023 at 11:20 am

      That’s good news about getting a BiPap, Eric. Good sleep is sooo important with ALS. Let us know how it goes.

      • Annette Cockrill

        February 10, 2023 at 8:28 am

        I’m new to this forum, and I’m so happy I found y’all!!

        I was diagnosed with ALS in January 2022. I have a multidisciplinary team meeting on Friday, February 17.

        Thank you for making this group available. It helps to know you’re not alone!

        Annette Cockrill

  • Rita Johnson

    February 9, 2023 at 5:25 pm

    I was diagnosed in Aug 2022 with onset bulbar ALS which has only affected my upper body of my speech, swallowing, eating, and breathing. I just had my follow-up at UCSF and at this point it has not progressed to other parts of my body. It was revealed, however, that my diaphragm is weaking which is causing me to me to have difficult breathing when I talk, walk or exert myself. I am waiting on my Cpap machine and a another (don’t know the name) that will help clear my lungs to avoid getting pneumonia. I am very blessed that I am still able to continue to work, drive and live alone. Has anyone else experienced this?


  • Dagmar

    March 13, 2023 at 12:35 pm

    I have an ALS Clinic visit coming up next week. Since it’s been 6-months since my last visit, I hope to show the doctor and staff my improvements in muscle strength and speaking. I’ve been working diligently on these… improving my gluteus medius (hip muscle) strength to improve my walking, and taking an online course that focused on paying attention to word pronunciation.

    I’ve also learned that in 6 months, there might be staff turnover. So though it’s always nice to meet the new staff, I don’t look forward to repeating my ALS (and life) history to them, again – – plus, I’ll miss the ones who left.

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