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All I can say is preach on…

Dreams are so weird. Lately I’ve been dreaming I’m in my powerchair attempting to leave but steep steps are blocking me. No matter how steep I attempt bumping down them. Sometimes backwards. Usually I wake up before I know if I made it. The last scenario was in a tree house. When I wake up I think how stupid because I couldn’t have gotten…[Read more]

I’m sorry you had to go through that. Keeping my iron levels up is a struggle for me as well. Have you heard of Iron Fish? It’s a way to infuse your water with iron. Figured I could try it and use that water with my feeding tube flushes. It probably wouldn’t provide the amount of iron you need though. Was your iron supplement that clogged…[Read more]

I’m sorry you had to go through that. Keeping my iron levels up is a struggle for me as well. Have you heard of Iron Fish? It’s a way to infuse your water with iron. Figured I could try it and use that water with my feeding tube flushes. It probably wouldn’t provide the amount of iron you need though. Was your iron supplement that clogged…[Read more]

Susana, I loved how you put that! I had someone basically get in my way yesterday. He totally doesn’t know who he’s dealing with!

Ari, the genius in what you said is that you recognized how you put yourself in that position, you saw yourself as the patient with all that comes with it: the uncertainty, the powerlessness, the preconceptions, the fear, the actual crisis itself, all placed on the altar of medicine while looking for a solution.

It’s so easy to forget that w…[Read more]

I have an F3 too, but I’m not sure how to answer your question. What do you mean by deflate? I don’t usually do any maintenance on my chair but I’m about to embark on the journey of getting a new seat. They’re coming to my house to do it, so hopefully, they can do a home visit T for you too. I guess it all depends on how extensive the issue is.

Overall it was a good movie. Some aspects were accurate. It just bothers me when movie after movie portrays how tragic living with a disability is. Maybe they’re just trying to get people thinking about how different their life would be. I don’t know. Rubs me the wrong way.

Haha your voice definitely does not sound annoying! And that’s true. I always wonder if when people tell me they have trouble hearing, they’re using it as an excuse because they feel bad saying they can’t understand me. I think I’m just paranoid honestly. Of what, I’m not really sure.

My voice is on the stronger side as far as the SMA world goes. Ironically though I don’t care for my voice either. So, I got into recordings and videos where I have to listen to myself way too much. I just hope other people don’t find me as annoying as I do.

My hearing must not be great because there’s a lot of times I miss what someone…[Read more]

Yeah my thoughts exactly. 😂 If I can, I force my caregiver to make my phone calls for me. In my defense, people have difficulty understanding me sometimes. So it’s just easier to have someone else make my calls if it’s like making a vet appointment for my dog or customer service. Something simple. But I still get self-conscious in everyday con…[Read more]

Yeah 100%. I think it’s a phenomenon in general—people dislike hearing their voice played back to them. But yeah, I’m self-conscious of my SMA voice. The squeakiness. The non-manliness of it lol (not to say a man must have a deep voice, but you know, just a self-conscious thing).

I especially hate phone calls because that’s when my voice is most…[Read more]

Oh cool! That sounds like it would be a shame solution but unfortunately, I use my phone as a mouse for my laptop. It connects through an app called WiFi mouse. So I wouldn’t be able to mirror my screen because then I wouldn’t have a mouse. Thank you for the suggestion though! That’s a great accessibility feature.

Hmm, I don’t think I’ve heard of Gigi & Nate. However, I’m not the biggest moviegoer. From what you’ve said though it sounds like another Hollywood film that misrepresents the life of a quadriplegic. The premise of it sounds good. But I’m so sick and tired of Hollywood portraying disabled folks only as sad and tragic. Like you said, they’re p…[Read more]

There is an app called ‘Phone Link’ which essentially mirrors your phone on the screen of your PC, so you can interact with it using your laptop’s touchpad or any other mouse you prefer. This is immensely helpful to me because the touchpad’s surface is significantly smaller than that of a smartphone and, therefore, much easier to reach. The only…[Read more]