I am so happy to see an update from you! I just got my 2nd PICL on the 18th and it got me wondering how you were doing. I’m so sorry you’re dealing with the dystonia. I’ve got some long covid/dysautonomia stuff going along with mine and you’re right that it’s so hard when it’s more than just the cci. One thing I absolutely love hearing you say is “I can’t do that YET” and “WHEN I’m healed”. Yes ma’am! ❤️
I’m partway through your update and hearing that you’re atlas has held for nine months, brings tears to my eyes. I also relate to how intense these conditions are and how especially dystonic symptoms are incredibly difficult and isolating because of the limits of sensory. If in time you end up having the energy for the dystonia video, I think it could benefit a lot of us who have both CCI and dystonia symptoms. Wishing you the best and rooting for you. 💛
@@RachelsCCIpath aw Rachel! Reading your comment made me tear up. Because I know you understand the deep suffering. The dystonia is very hard. How has PT and ROM increasing helped you? I watched your video and saw your increasing ROM! 🤩🙏🏼you’re amazing! Xoxo merry Christmas 🎄
@ Thank you so much for these words. It means a lot to feel seen and validated. We have such dedication and fighting spirits, but these conditions demand so much from us and take away many freedoms. I really related to what you said about the choices you’ve had to make. I also have to limit visual activities that require a lot of coordination, head position, or focus. Like you, I’ve found that visual and sensory coordination takes a lot out of me, often leading to more twisting and contractions in my body. That said, I’ve seen significant improvements since surgery, though I’m also dealing with the lingering layers of not being treated sooner. I’ve stopped car travel too, and while these sacrifices are hard, I truly believe they’re creating the foundation I need to make these small but meaningful gains. I’m lucky to have a physiotherapist who comes to my home, which has been incredible for working through the compounded layers of adaptations throughout my body. However, I haven’t made the progress I hope to processing sensory and sound. The Osteopath has been focusing on nerve and proprioception work, which are helping incrementally. My left side still lacks strong input, and when I’m flared, I struggle even more with muscle contractions and discoordination. Some of these sensory-related symptoms are improving as I heal and carefully expose myself to controlled challenges that push my system just enough without overwhelming it for too long after. I really miss being able to do more on the computer, connecting with others, and being in the community or with groups. I have found using programs like speech-to-text and text-to-speech help me engage some, but they’re still very taxing and require more visual stability than I can routinely manage. I’m not sure what ROM is, Do you mean range of motion? I’m making progress in the rest of my body but in my neck work done directly has thus far counterproductively crashed me for weeks. I know your energy is limited, but if you ever feel like sharing what’s worked for you with dystonic symptoms or anything else, I’d love to learn more. No pressure at all-I know how borrowing too many spoons can affect the following days (or even weeks). If you’re on Instagram, I am on occasionally and find it’s a good platform for sharing voice memos. Also, If there’s anything I can do to support you, please let me know. I’m rooting for you and deeply appreciate everything you’ve shared. It’s given me a sense of connection and helped me understand myself a little better, too. I hope you were able to experience some nice moments over the holidays. Warmly, Rachel
@@HannahMcGlinchey sorry Hannah! I used to do that and it depleted the energy I have. I post everything here to help others and share what I’ve learned 💕🙏🏼
Hey Diana, happy holidays. Small wins are the way forward, keep up the good work
@@fdauti_ca thank you! How are you Fatjon? The small wins are so hard to appreciate when the journey is so long but you’re, so right!
I am so happy to see an update from you! I just got my 2nd PICL on the 18th and it got me wondering how you were doing.
I’m so sorry you’re dealing with the dystonia. I’ve got some long covid/dysautonomia stuff going along with mine and you’re right that it’s so hard when it’s more than just the cci.
One thing I absolutely love hearing you say is “I can’t do that YET” and “WHEN I’m healed”. Yes ma’am! ❤️
@@kimikazikola aweww Kimi! You did it! Yes the words we say are so powerful! I hope your PICL helps you progress even more! Merry Christmas 🎶🎀🎄🎁🕯️
Wishing you a peaceful and happy Christmas and much healing in the new year ❤
@@maesmith224 thank you Mae! Wishing you the very best as well 💕
Best wishes
@@neptuneskleinberg thank you! Happy holidays!
I’m partway through your update and hearing that you’re atlas has held for nine months, brings tears to my eyes.
I also relate to how intense these conditions are and how especially dystonic symptoms are incredibly difficult and isolating because of the limits of sensory.
If in time you end up having the energy for the dystonia video, I think it could benefit a lot of us who have both CCI and dystonia symptoms.
Wishing you the best and rooting for you. 💛
@@RachelsCCIpath aw Rachel! Reading your comment made me tear up. Because I know you understand the deep suffering. The dystonia is very hard. How has PT and ROM increasing helped you? I watched your video and saw your increasing ROM! 🤩🙏🏼you’re amazing! Xoxo merry Christmas 🎄
@ Thank you so much for these words. It means a lot to feel seen and validated. We have such dedication and fighting spirits, but these conditions demand so much from us and take away many freedoms. I really related to what you said about the choices you’ve had to make. I also have to limit visual activities that require a lot of coordination, head position, or focus. Like you, I’ve found that visual and sensory coordination takes a lot out of me, often leading to more twisting and contractions in my body.
That said, I’ve seen significant improvements since surgery, though I’m also dealing with the lingering layers of not being treated sooner. I’ve stopped car travel too, and while these sacrifices are hard, I truly believe they’re creating the foundation I need to make these small but meaningful gains.
I’m lucky to have a physiotherapist who comes to my home, which has been incredible for working through the compounded layers of adaptations throughout my body. However, I haven’t made the progress I hope to processing sensory and sound. The Osteopath has been focusing on nerve and proprioception work, which are helping incrementally. My left side still lacks strong input, and when I’m flared, I struggle even more with muscle contractions and discoordination.
Some of these sensory-related symptoms are improving as I heal and carefully expose myself to controlled challenges that push my system just enough without overwhelming it for too long after. I really miss being able to do more on the computer, connecting with others, and being in the community or with groups. I have found using programs like speech-to-text and text-to-speech help me engage some, but they’re still very taxing and require more visual stability than I can routinely manage.
I’m not sure what ROM is, Do you mean range of motion? I’m making progress in the rest of my body but in my neck work done directly has thus far counterproductively crashed me for weeks.
I know your energy is limited, but if you ever feel like sharing what’s worked for you with dystonic symptoms or anything else, I’d love to learn more. No pressure at all-I know how borrowing too many spoons can affect the following days (or even weeks). If you’re on Instagram, I am on occasionally and find it’s a good platform for sharing voice memos. Also, If there’s anything I can do to support you, please let me know.
I’m rooting for you and deeply appreciate everything you’ve shared. It’s given me a sense of connection and helped me understand myself a little better, too.
I hope you were able to experience some nice moments over the holidays.
Warmly,
Rachel
Hey Diana , did dr centeno say how many picls you needed ?
Can you reach out to me please as im going for the picl myself x
@@HannahMcGlinchey sorry Hannah! I used to do that and it depleted the energy I have. I post everything here to help others and share what I’ve learned 💕🙏🏼
@@HannahMcGlinchey I hope it goes very smoothly! 🙏🏼best wishes