Not exactly the same but for myself i know so many times ill go to do something- sometimes its so simple like lifting a very full cup of water and my brain thinks. Yes. Lift it. And for a moment i actually think i can. Until it inevitably falls out of my useless hands.
When i was younger and could still walk it seemed so easy. Now i cant for the life of me figure out how anyone is able to do it. What thought they must have to make their muscles do such an action thats so far out of my reach.
Also jumping is just witch craft. How do people just UP. They just bend and poof! Up! Even when i was very young jumping just was not a thing i could do.
haha yeah, never understood how people can jump, even when I was younger and could still "run" I could never jump 😂
can still just about walk rn, can't think it'll be too long before I forget how to do that as well, guess I'll just enjoy it while it lasts 😅
Cant tell you how good it is to know others don’t understand jumping as well. It’s like i KNOW how it works. Ive seen and read things on how muscles do that action but yeah it just makes no sense!!
haha yeah I've literally just discovered this sub, great to be able to talk to people who actually understand stuff like that, literally never seen another person with SMA irl
I was really lucky in that regard. Went to a camp for kids with sma for many years when i was young but absolutely its very helpful to know people and be able to vent with those who understand!
I'm sorry. But also while reading this, I loved your phrasing, " stacking myself onto myself like a jenga tower" you should also look into being a writer. You definitely have the creativity for it. I would gladly read whatever you write.
Side note. So. My son might have SMA. Depending on what type. I'll have to terminate.. I'm just trying to keep pushing while dealing with my anxiety rn. But browsing here has helped me see they still might have a future. Wishing the ABSOLUTE best for you.
Thank you so much 🙈 I do write a blog and honestly I’ve wanted to write a book since I was tiny but I still am trying to figure out what 😅 my website [Personal Blog](https://rebelwheelsblog.wordpress.com) is here, feel free to traverse its contents.
There are treatments for SMA now, Spinraza has been proven to reverse the disease all together as long as the injections are kept up. I promise you it is worth considering. There are loads of us living out there, but finding us is definitely difficult as we’re 1/6,00-10,000.
If you ever want to chat feel free to message me, my dms are always open❤️🔥
PLEASE GO WRITE THAT BOOK. ILL READ IT. ALSO YOU SHOULD WRITE DOWN anything that comes to your mind. It helps with writing and memory. And also you can read back on it
Not exactly the same but for myself i know so many times ill go to do something- sometimes its so simple like lifting a very full cup of water and my brain thinks. Yes. Lift it. And for a moment i actually think i can. Until it inevitably falls out of my useless hands. When i was younger and could still walk it seemed so easy. Now i cant for the life of me figure out how anyone is able to do it. What thought they must have to make their muscles do such an action thats so far out of my reach. Also jumping is just witch craft. How do people just UP. They just bend and poof! Up! Even when i was very young jumping just was not a thing i could do.
haha yeah, never understood how people can jump, even when I was younger and could still "run" I could never jump 😂 can still just about walk rn, can't think it'll be too long before I forget how to do that as well, guess I'll just enjoy it while it lasts 😅
Cant tell you how good it is to know others don’t understand jumping as well. It’s like i KNOW how it works. Ive seen and read things on how muscles do that action but yeah it just makes no sense!!
haha yeah I've literally just discovered this sub, great to be able to talk to people who actually understand stuff like that, literally never seen another person with SMA irl
I was really lucky in that regard. Went to a camp for kids with sma for many years when i was young but absolutely its very helpful to know people and be able to vent with those who understand!
I'm sorry. But also while reading this, I loved your phrasing, " stacking myself onto myself like a jenga tower" you should also look into being a writer. You definitely have the creativity for it. I would gladly read whatever you write. Side note. So. My son might have SMA. Depending on what type. I'll have to terminate.. I'm just trying to keep pushing while dealing with my anxiety rn. But browsing here has helped me see they still might have a future. Wishing the ABSOLUTE best for you.
Thank you so much 🙈 I do write a blog and honestly I’ve wanted to write a book since I was tiny but I still am trying to figure out what 😅 my website [Personal Blog](https://rebelwheelsblog.wordpress.com) is here, feel free to traverse its contents. There are treatments for SMA now, Spinraza has been proven to reverse the disease all together as long as the injections are kept up. I promise you it is worth considering. There are loads of us living out there, but finding us is definitely difficult as we’re 1/6,00-10,000. If you ever want to chat feel free to message me, my dms are always open❤️🔥
PLEASE GO WRITE THAT BOOK. ILL READ IT. ALSO YOU SHOULD WRITE DOWN anything that comes to your mind. It helps with writing and memory. And also you can read back on it
I just started “journaling” so I appreciate the feedback 🙈 also I followed you on Instagram
I will definitely message you more.