I agree with both of you. I definitely enjoy listening to music, especially Heavy metal music, so I definitely say that is A hobby of mine. Some other hobbies of mine are watching ice hockey, Listening to audiobooks, and Researching recipes and The science of food. However, 5 years ago I considered writing A hobby of mine. Now it is a job. I… Read more

Oh my god 😂😂😂 That is amazing

It is officially SMA Awareness Month! This year I want to tell one of my favorite stories involving my life threatening disease: As a disabled person, I obviously receive the usual questions like “What’s wrong with you?”, “What happened?”, “Does it hurt?”, “How do you go to the bathroom?”, “Do you have to sleep in your wheelchair?”,…

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Thank you

I hope so too. I’ll try to keep you posted

I tried the PureWick when I was in the hospital. It did not work at all for me, No matter how I position it.

Right now I am in a nursing home cuz of the severe progression of SMA due to the neglect I went through while I lived with my parents. Nursing homes are not for people like us. I am being neglected here too. I’m trying to move in with…

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I am writing a romantic novel where the main character has SMA type 2. I don’t want to spoil anything, but 1 of her friends has a new son with SMA type 1. In the chapter I’m writing right now, They find out about A new treatment option Spinraza (It is set in the past).

My question is: Can I use the name Spinraza or should I make up a different name?

Thank you everyone.

My mental health has been terrible thanks to the Nursing home I’m living in, my older brother, My mom, etc. Now Trump,Musk, and Kanye are making it 10 times worse. These past few days have been almost blissful even though I was fighting for my life. I am extremely sick right now. I can barely breathe. Because of this, I’ve…

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My brother is a scientist. He is still in school but he already has 2 research papers published. Anywho, Last Saturday My other siblings came to celebrate his birthday. At some point, We all started to talk about politics. Probably not a smart idea but still. My brother the scientist He said that Since the president is cutting all funds…

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Thank you guys. You both mentioned a lot so I’m sorry if I forget something…

1. I am working on getting my YouTube channel back up and running and I plan on Having a video on All the different nursing homes I have been to.

2. My feeding tube is a dangler lol

3. I am on the same diet I have had for 8 months. I use formula. Everything seems fine…

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Hey everyone! I have a problem that I hope you all have some insight on… I received my 1st G/J tube At the end of January 2024. I had no problem with it at all until May. I had just moved to a new nursing home – the worst Nursing home I have ever been to I might add and I have now been to 8 nursing homes – and The nurses were not taking… Read more

I wish they knew that the things I do aren’t cuz I need to be treated, like I am sick or something – it’s cuz I need to be proactive or use it as therapy. For example, when I ask for cough assist they ask if I am feeling okay or if I need an X-Ray and I’m like, No I am doing it for therapy to keep my lungs strong.

That’s a good idea. Thank you!

I don’t know what I’m doing yet. I want to do something fun or cool On Facebook but I don’t know what. Any ideas?

Thank you

That is another thing: we don’t have a clinic near us

“just a simple blood test”? I don’t know about y’all but I am a VERY hard stick. Like when I came back to the nursing home after being in the hospital for a week, one of the CNAs looked at my arms and said, “Oh my god! What did they do to you?!” cuz I had so many bruises from them trying to stick me.

But I do really need to get on…

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Wait. You have to have genetic testing even if you already know you have SMA?

Thank you!

Wow thank you guys!

I currently live in southern Indiana. Right now we live in different cities cuz he is in college and was in college when all that stuff happened with our parents. But when he found out about it, he got…well mad. He said he’s tired of not being able to trust whoever’s taking care of me and he misses me like crazy anyway so…

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Do I need a neurologist to get Evrysdi? Or I guess a better question would be: HOW do I get Evrysdi?

So my brother and I are thinking about moving eventually so he can go to grad school, but we don’t know where yet. Right now he’s looking at either Chicago or Champagne Illinois. They both have good opportunities for him in terms of education AND career, they’re not too far away from our family, and Chicago at least seems to have a lot of… Read more

Trust me, I have already thought of that. I only know his 1st name

Thank you. 🙂 I’m gonna try if you ever even see him again. I don’t think he works for the ambulance company the nursing home I’m in uses. 😑😑

Awe! That’s so cute! I’m happy for you. Good luck with everything!

The ambulance company said they don’t have an ambulance available to take me so I had to reschedule. 😑😑

My favorite was going on the boat. Or Smores. 😄😄

My second foster parents took me to a disability camp when I was 4 or 5 years old. It’s one of the only good memories from my childhood. I finally learned what it felt like to be safe and well cared for while also having fun

Thank you guys! I’ll definitely try. Maybe I’ll tell him about the book I’m writing… One of the main characters is a paramedic. I let one of my previous paramedics read the chapter where the paramedic had to save his best friend. She loved it and had zero notes on how to make it more accurate. Maybe Wyatt would be impressed by that…🤔😉

Thank you! I am in therapy now, not just for the medical traumas but for some other stuff too.

I’ve had a couple bad experiences with paramedics but most of my experiences have been really good.

I am working on myself but I’ve always been a hopeless romantic. I can’t stop thinking about him. And I am so tired of being single, you know?

So I have a question but first… Storytime (and buckle up cuz it’s a long story):

Two Septembers ago, my adoptive moms April and Brook (who were my only caretakers since my little brother left for college and I have been separated from my two older brothers and my older sister) broke up and Brook moved out, leaving me alone with April. April…

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So I’m currently in the hospital with a new trache in and the goal from the very beginning was to get better and get the trache out. The last step before we can take it out is to cap it off completely for 72 hours. The longest I’ve been able to do is 6 hours. It honestly feels like the trache itself is in the way. It’s definitely not… Read more

Quick question: what are the pros and cons of evrysdi and spinraza and which one do you prefer?

And does anyone know how much the first one cost? I can’t find it.

Hi guys, this is Crystal.  I haven’t been here in a minute, because I can’t type on my own anymore.  Right now I am in respite so someone is helping me.  I miss talking to you guys because it has been a help to me.  Although, I can’t type anymore I can use my Alexa to call people.  I was wondering if you could give me your number so that I… Read more

Yes, I have a lot of contractures.  They hurt a lot, especially in the knees.  I had a surgery on my right knee when I was 9, but it didn’t help at all, and it was a lot of pain during the surgery and recovery.

I play PlayStation 4. I have a monopoly game on there that also has family feud and trivial persuit and scrabble on it and I seriously love it.

Thank you Kathryn. That does make me feel better.

I have a custom chair that tilts back. It doesn’t come with a tray but that’s okay. I have a table that is adjustable and we have it at the best height. I love it and can’t live without it. Still my arms are extremely weak. I’ve considered getting the jaco arm but 1). my mom swears I’m not at that stage yet and 2). I’m kinda scared of anything… Read more

I don’t think I’ve told y’all yet but sma has progressed so freaking much for me now that we’ve only found one chair that actually works for me and that one doesn’t have a tray. And yeah we do have a service provider but she is currently working on getting me a new bed and home health aide.

I can barely even swallow anymore. Even my own spit… Read more

Thank you guys. My mom has been trying to get at home health aides or nurses. Is that the same thing? I don’t know but we haven’t had much luck at all. Actually we’ve had zero luck. Right now I’m in a respit home but my time here is almost done. I don’t know what will happen next but I know we’ve had more luck with this place than having a… Read more

Hey guys I’m back for a few days. I disappeared cuz my arms have gotten to the point where I need help with everything and my parents don’t want to sit with me and help me type lol. But I’m in a respit home rn and they help me. Anyway I want to talk my mom into letting me start online dating but I know she is concerned about how I will… Read more

Thank you! I’ll definitely check it out!

I wish I could give some advice, but actually I need some advice on this one too.