Tammy

I fully agree. I don’t think typing should have any factor in insurance coverage. It should be what your needs and limitations are. My mom was told the same thing about me when I was a baby and classified as type 2, that I probably wouldn’t live past 2 years old. Here I am 40 years old and I’m one of the healthiest sma patients that I know…[Read more]

Thanks! I’ll take all the help I can get! And I know it’s makes me see red as well. Like how dare you think you have the right to control me. If you feel like I’m putting myself In Harm’s Way than that’s my business time. They themselves could fall down the stairs and their own house and crack their head open. But does that give somebody else the…[Read more]

Thanks! At least I tried to LOL but I’m definitely never 1 to tell anyone what they should or shouldn’t do. Because I don’t know either situation or their health issues. And just like I mentioned with doctors, I think some work well for certain patients with certain issues and they don’t necessarily work well for other patients with different…[Read more]

And also how you mentioned “As long as you’re not opening yourself up to any legal blowback”… that’s also what I’m unsure of because I don’t know if that’s considered violating the contract. However, I was never told about this stipulation until after I already applied and funnily enough, my insurance case supervisor didn’t know about it e…[Read more]

Thank you that is really great advice! Yeah I’m not sure if this rule is specific to my state or if it’s everywhere. I spoke to the Ada hotline and they said they “believe” this is a violation of my rights but they can’t say 100% for sure. They are going to investigate it because they recommended that I file a complaint against the state which I…[Read more]

Also I apologize in advance if my reply posted more than once. For some reason this form can be glitchy on my phone

If I were you I would talk to your pulmonologist about it. Voice your concerns. Also do you have a BiPAP machine or cough assist? Reason I ask is because those machines could come in handy if you are worried about having trouble breathing because of a reaction. I personally suggest getting it but I’m also not a doctor so don’t just go by me. I got…[Read more]

Wanted to give an update on the thread and would love any advice from anyone. So I still have no answers from the state and my worst fear just happened. The property manager called and asked to see some more documents and said that they want to do a showing of a unit with me soon. Which means they have a unit available. So I have no idea what to…[Read more]

Day camp counselor was my first job

Well at least you were able to make it work. That’s the most important thing! Yeah Spain was surprisingly good, as I’ve mentioned especially with their airports. I mean don’t get me wrong there was the occasional old shop or certain castles that were not accessible but for the most part everywhere we went was. We just rented a van where we were…[Read more]

I have found Las Vegas to be very accessible both times that I was there. Even Spain was really good. Their airports were way better then they are here with handling wheelchairs with care. They really make sure everything is taken care of properly

The Maldives… ohhh if only I was rich. Not only is the flight ridiculously long but you also have to take a small private plane to the island after you land at the “mainland” airport. Oh and also did I mention is like thousands upon thousands upon thousands of dollars? Yeah… 🙄 As mentioned in the previous thread, Dubai is my next more…[Read more]

Out of curiosity what are your smn2 numbers? Mine is 3

For me I feel like it’s gotten worse as the years have gone by because(and you can tell me if you agree with this or not), I feel like our wheelchairs have gotten a lot more fragile then they used to be when I was younger. Those older things could take a beating and keep going with no problems. My current chair I feel like is so fragile and the…[Read more]

Thanks!

Okay thanks! Yeah I can’t remember whether or not I asked them about that or not. But I will wait until tomorrow when they reopen to call and ask. Just to be safe. I don’t really have a fear of having any interaction, my fear is more of like something I take that may render the Evrysdi and effective. It’s not really bothering me that much it’s…[Read more]

I totally agree, I feel like lately stress has been my new normal. I’m always constantly stressing about caregivers not being able to show up as I am down to only 3 of them and things have been happening in their lives lately. It’s non-stop stress and the agencies have not been able to find me any extra staff. I think we just get so used to…[Read more]

Yes I definitely have this issue and fear. Or if some idiot goes to talk to me and grabs my hand and pulls it off that always pisses me off. Luckily all of my friends know how to get my hand back on if it happens with them. And even people at my job. But it’s still a fear of it happening by myself which it has happened. Not very often though. It…[Read more]

I’ve had it happen too. Usually it’s short lived but I’ve noticed it comes on more with stress. One time it lasted for like 2 months when I was really distraught from losing a close friend. But eventually it went away. Not sure if it is an sma thing or just and anybody thing. It has happened to my mom as well and she doesn’t have sma