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QALSody Treatment #30
Yesterday I had my 30th treatment. It goes smoothly, and the procedure itself on takes about 3-4 minutes. That’s from prepping to taking the needle out. My doctor typically gets it on the first attempt! The worst part is the shot of lidocaine, and I can handle that without a doubt! Afterwards I need to lay flat for 45 minutes. Since starting in July 2023, I’ve improved drastically. My forced vital capacity has improved by 20%. I haven’t been tested in a 3 or 4 months and I think it’s actually slightly better than those numbers. The only thing not improving – and seems to be holding steady is my voice/throat. I have reflux, and slight weakness in some throat muscles. I sound a bit raspy, and it gets worse as the day goes on. I take all that as a win.
One exciting thing happened. I was interviewed by the University of Miami’s media team. The are doing a written article and a video for the ALS clinic. I spent about an hour being interviewed …ights, camera, action! Then another 40 minutes doing photos and videography. At next months treatment they are trying to line up some Miami News stations to do stories on the QALSody Clinic and how successful it’s been. I was the first one there to get QALSody and my progress has been better than even the doctors expected. I’m excited because it will draw more attention to ALS, and the incredible need for more treatments and a cure! I have the most amazing team of medical professionals taking care of me and I am so grateful.
When the video is out I’ll put up a link. I have know idea of the timeline. I’m so proud to be part of this ALS movement and pray that it helps all of us by raising money and awareness showing the need for more research!! For a cure!
Amanda
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5 Replies
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Hi Amanda,
Thank you so much for sharing your journey with QALSody. It’s truly inspiring! My father was diagnosed with ALS three weeks ago, and he’s currently receiving Radicava in my home country. He’s completed 8 out of 14 doses so far. I’m following your updates closely and really appreciate your posts. I wish you all the best and hope the treatment continues to work wonders for you! Thanks!
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Ali,
Thank you so much! I’m sorry to hear about your father. Has he had genetic testing done? Is that an option there? Please reach out if you have questions.
Amanda
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Thank you so much for your reply. I asked my parents to talk to the doctor. My mom said she called the doctor’s office to ask about this test, but the receptionist told her to wait until my dad finishes the 14 doses of Radicava and then ask the doctor on his appointment day. When we get the answer, I will let you know. Thank you!
Ali
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Amanda,
Thanks so much for the update. I’m happy for you. I’m hoping to have similar results. I will have my 8th qalsody treatment next month. I have familial ALS. So far I still have my upper body strength. My issue is with the use of my legs. I’m in a wheelchair. I know that walking again is not going to happen but maybe treatments will one day improve to give me a little of my mobility back. Your updates are encouraging. Please keep it coming.
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Leander,
Don’t be surprised, or do be on second thought, you may walk again! I’ve heard of several cases where that has happened. They SOD1er did not suddenly start running marathons, but both were able to get around their homes without a wheel chair. I’m sure there are so many factors involved that how exactly one of us will respond is impossible to predict. If you ever want to talk, just message me or reach out on Social Media – I’ll happily share my number. I’m looking forward to hearing how you are doing and what you are experiencing. I started noticing undeniable things around my 8th treatment :). Before that I kept telling myself I was just having a good day … then there were a lot of “good days”….. I’m thinking of you and sending positive vibes~~
Amanda
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