Hi! Our insurance requires us to submit the forms before I turn 26. My dad still works and is years away from retirement. The insurance is through the company he works at.

Hello! Has anyone here applied to stay on their parent’s insurance plan, got denied, than successfully appealed? I will turn 26 in January. We applied a few weeks ago and got a denial letter from our insurance a few days ago stating that I do not meet the qualifications of being severely physically disabled and being financially dependent on…

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I’m actually still on Spinraza! Since it was just my contractures releasing and not something major, I stayed on it. I had looked into Evrysdi but decided not to. I’ve actually been in a clinical trial for a little over a year for the Thecaflex port. So my injections are now done in a port in my back and I’m able to stay in my wheelchair!…

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Accessibility was great as far as transportation but the sidewalks were very rough. We tried walking as much as we could, but it was very tiring for me after a few blocks. My favorite part of New York was Brooklyn!

My neurologist said that because of how strict the regulatory process is, by the time they would get it approved, the medicine itself would already be out. I’m 25, so I have hope that this medicine will help improve my strength! As far as Spinraza, no one knows how my contractures released because Spinraza is not supposed to be able to that.…

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Got back from New York two weeks ago, and just wanted to give an update that I was able to take an Uber back from Brooklyn to Manhattan with no issues! There were plenty of accessible Ubers in the area waiting.

Has anyone been able to get into the Expanded Access Program (EAP) for Apitegromab? Or has anyone been in the clinical trials for it and seen improvements?

I tried to get into the EAP a couple months ago with my neurologist in Houston, but unfortunately it didn’t work out. I’m really hoping I can get on it as soon as it comes out in…

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Aww, I’m sorry to hear that! The injectable I’m talking about is called Ajovy and it’s not botox.

So will an accessible Uber not be able to go to Brooklyn? On the app, it doesn’t show that it won’t go there.

Hi! I am flying into Laguardia airport and I have seen videos saying that there are accessible taxis waiting at the airport. It’s also listed on their website that there are accessible taxis waiting. Is that not true?

Hi! I will be taking a week vacation to New York next month. We plan to be walking pretty much everywhere we go, but I need to be able to bring my cough assist with me. I have the Philips Respironics Cough Assist T70. Right now to bring it somewhere with me, we use a rolling bag. But this will not be very realistic while walking on the…

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I get cluster headaches often and Nurtec has worked well for it. If I keep getting frequent migraines, which I am unfortunately, my doctor said the next step would be to get on a injectable preventative medication. Have you tried one of those?

I have been on Nurtec since August 2024 as a treatment medication and it has worked very well with me. Right now, I don’t take migraine medication every day, but I believe that within the next year or so that I’ll have to be. I do not have any side effects with Nurtec so far. I have become very sensitive to different medications that I have…

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I actually don’t have a pulmonologist right now. The area where I live, it’s a waste of time, because they don’t know anything about SMA. I was referring to the oral surgeon in my post.

Thanks for reminding me about popsicles! I’ll be drinking mainly powerade and water after surgery. Along with ice cream for a few days.

My primary doctor put me…

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I am having surgery tomorrow to remove all 4 wisdom teeth plus 3 other teeth. Has anyone used cough assist after having this surgery? I do not want to get a dry socket and experience that kind of pain lol. My doctor called out a few different medications for me to stop/quit coughing and so far it seems to have worked. Just worried that if I…

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What drew me into looking into Minnesota is how blue of a state it is. I also have some family members who live in or around St. Paul. I am looking into any blue state that I could move to. Currently, I live in Louisiana, which is a very red state. In a year from now, it will potentially be very unsafe for me to live in Louisiana. My…

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Hello! I am looking into moving to Minnesota from Louisiana. I have only researched the state minimally, but it looks like I would be able to buy into their medicaid program.

For anyone who lives in Minnesota, what is it like for the disability community? What is the healthcare system like? Pros and cons?

I am coming to the realization that I…

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I was using that medication in the beginning for a while but unfortunately it stopped working for me.

Spinraza is definitely helping me so that’s why I’m still taking it even though it’s painful.

Even with an ultrasound machine, they have a hard time drawing my blood. For this past injection, I drank liquid iv every day for 2 weeks straight and it still didn’t help. Basically a finger stick is the only way my blood will flow easily lol.

Sorry for the late response! I haven’t been on here since I last posted until now. I ended up having my injection in October (2 months late), and I did have sedation. The sedation worked great and I didn’t feel the injection like I had been! I ended up having to have my iv in my thumb which was not fun lol. My problem is no matter how much…

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Does anyone have any positive experiences with meeting people on dating apps? I’ve been thinking about joining one but I’m scared lol. My friends want me to join one and want to create a profile for me. I’ve never dated or had a boyfriend before so I’m nervous. I’ve also heard bad stories from people in a wheelchair who have used dating apps.…

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Hi! I was wondering if there was anyone on here who is taking Spinraza with sedation. If so, what medication do they give you?

My injections have been moved to my back recently due to having a new interventional radiologist. Previously, I was having them in my neck. Now that they’re in my back, I am having excruciating pain due to the location…

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Gorgeous dress!! All Too Well was so good! I’m so happy she did the 10 minute version of it. My friend and I were screaming the lyrics lol. Yes, the autumn leaves and snow confetti was the perfect touch!

Yes I absolutely loved it! The best concert of hers that I’ve been to! It truly is an experience like no other! My outfit was based off Reputation. My favorite performance was Tolerate It and Don’t Blame Me/Look What You Made Me Do.

So glad you went to the concert! My friend and I went to night 1 in Houston! I was able to get floor tickets and it was the most amazing experience ever!! My friend and I cried a little when she came out because of how close we were lol. That was my first big outing since the pandemic too. As far as anxiety, you just have to push through it!…

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Hi! Thanks for all the information and tips! We were thinking of renting the medical equipment I need but didn’t know if they had medical equipment stores like here in the US. That’s really cool that every cab is wheelchair accessible! It’s amazing to hear how so many different countries are far more accessible than here in the US. Wish that… Read more

I am looking into taking a summer vacation next year and I’m really interested in going to London, but my dad is concerned about the duration of the trip and how we can get the necessary medical equipment for our stay (bath chair, etc.). Has anyone traveled to a different country and could tell me about their experience?

I do not. In my area of the state I live in, they are not that helpful so I haven’t gone that route.

Right now I’m only looking for jobs where I can work from home, which apparently is really difficult to find lol.

I’ve been searching indeed for remote jobs online but I’ve had no luck in that department. I’ve been looking into interior design, event planner, and travel agent. I really have no idea on what I want to do because I don’t know what I can do. I’m on medicaid and receive a waiver program in my state, and to keep all the services I can’t make… Read more

Hi! I graduated college in December with a Bachelor’s Degree in General Studies with a concentration in Behavioral Sciences. Does anyone have this degree and has a job in this field? I’m having no luck finding a job that I can do. Any ideas would be super helpful!

Yes it’s true. My family access manager told me this in December. They have been doing clinical trials for 50 mg for two years. My family access manager also told me that she heard in 2025 or 2026 our dosage could be 100 mg once a year. The 50 mg dosage would only be twice a year. I’ve never experienced the slump you’re talking about but I’ve… Read more

December 14th, 2022 made my 20th dose of Spinraza. August 2023 will make 6 years that I have been on treatment. Up until December, I have been getting my treatments cervically, but I now have a new radiologist who will only do it in the back. This past injection was challenging since I have rods in my back. I also had a lumber puncture… Read more