DeAnn R

I went on a spur of the moment day trip with my Mom yesterday. Today I’m beat. The 91 degree heat and high humidity probably isn’t helping. It was worth it though.

That sounds awesome Crystal. Glad you made it to the movie and had fun. Just keep an eye out for movies you’d want to see, and I’m sure it would be no problem finding someone to go along with you. I’m already looking forward to the next Jumanji. We went as a family last Christmas and I hear another comes out this Christmas.

I don’t think you…[Read more]

Even though I’m currently on Spinraza I’m anxiously awaiting Risdiplam coming to market. Of course cost and access are among my biggest concern as in my opinion local pharmacies may be hesitant to carry a medication like that because of the cost. At least my pharmacy can be funny about things like that. Then there’s the question, will my…[Read more]

Krystal, sounds like you have a smart cookie on your hands if she’s already letting you know she’s filled her diaper. I’m not positive when Mom said she potty trained me, but similar to Kevin’s experience my Mom said it was a breeze with me because I couldn’t go anywhere. She’d just set me on the potty and when I went she’d take me off. Getting…[Read more]

Sorry, have to disagree on the feeding tube Ryan. For me it’s a necessary evil, but my opinion is if you don’t need it, don’t get it. Especially with treatments at such a young age. It might be one of those things that’ll never be necessary for some. But that’s what I love about the forums. Lots of opinions so folks can make up their own minds.

Yes Ryan, I’ve heard a lot of folks on Spinraza feel the need to up their protein. Makes sense if you think about it. I myself haven’t intentionally done that, but find myself snacking on cheese a bit more. Assistance with a dietitian could be helpful although the ones around here don’t know squat about SMA. As with anything moderation is key,…[Read more]

Let me know what you find out! It’s something I would consider, but not if I have to be put under.

If you search protein shakes Michael Morale talks about one he uses.

At first I didn’t think I’d be able to get it either because of my “bulletproof” fusion, but I’m fortunate they can do it this way as like you I’m not sure I’d do a surgery. Keep your ears open for Risdiplam as well. It’s a daily oral medication that works similarly to Spinraza I’ve heard. Not positive where they are on trials with that one.…[Read more]

Sounds fantastic Crystal! I’m not an avid movie goer, but just went to one recently. I was disappointed in the seating in this particular theater as I had to sit behind everyone else as I stay in my chair, but we made it work. I’m sure it’ll work out for you as well, and so be it if you shed a tear or two.

Great to hear your juices are flowing…[Read more]

This article actually brings up a lot of questions for me. Did they just do an x-ray or did they do a CT scan? A CT scan can show much better detail. Were all the options discussed? I get mine through the neural foramen. It’s an approach from your side where they access the spine through the natural opening created where your nerves branch out…[Read more]

Welcome! Glad to have you here. Feel free to chime in on any topics or create ones of your own. Hope you’ll find we have a great community.

It does seem like life should be easier on so many levels. I figure nobody really wants to hear that my feeding tube port just leaked through my t-shirt or that my foot is killing me because I wore the wrong shoes, so my go to is, “I’m good, how are you?” but for some reason that opens me up to all their drama. So I listen as my eye is tearing…[Read more]

Kelly, sorry to hear the move has become stressful in this way. There’s so much more that we have to consider and deal with when we do things. It’s probably one of the big reasons I haven’t taken the plunge and moved. I have a pretty good setup where I’m at an just don’t have the nerve to rock the boat. Good luck with everything. I’ll say a…[Read more]