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Do you have (or have had) any upcoming medical appointments that you’d like to ask for advice on or share your feelings about?
Many of our forum members can relate to your situation and offer support by way of their own experiences.
Please note that this forum’s purpose is to discuss issues related to ALS, not to provide diagnosis or medical advice.
Tell us, what’s on your medical calendar this month?
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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.
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That’s good news about getting a BiPap, Eric. Good sleep is sooo important with ALS. Let us know how it goes.
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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?
Rita
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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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