DeAnn R

Hey Mike, I do know some folks who get theirs via c-spine injections. Like Lupa mentioned Kevin does. I’ll see if he can chime in. As far as I know it hasn’t made much difference. I did get one injection up a level once but didn’t notice a significant difference. I know some do the Trendelenburg position with their head below their feet for an ho…[Read more]

Thanks for all the feedback. I’m less than confident the change in formula will help, but figure it’s worth a shot. The dietitian is nice, but as you pointed out not really familiar with SMA. It’s not always fun being a learning experience for them more than them being helpful for us. For now I’ll make this little change to see if there’s…[Read more]

Hey Sherry! I’m hoping others will chime in with better info than I have, but I just wanted to say I can relate to your hesitancy when it comes to surgery. My last surgical experience was not great, so I avoid it if possible, but sometimes it’s just not possible. Are you a part of any Facebook groups? I’m trying to remember which group it is,…[Read more]

I’m so glad you had the chance to check out some options. It’s definitely an overwhelming process. Good luck with it. We’d love to hear how it goes, so feel free to post updates letting us know what you think.

I feel ya. Two of my closest neighbors have just moved. They’ve been here since I moved in 16 years ago. It stinks. COVID throws a wrench into things but can you figure out a way to throw a little send off party of some sort? It might be a way to show your appreciation and be supportive despite being bummed about it.

We went from a full size van with side entry electric lift to a rear entry mini van with a manual fold out. Love it, no regrets. We don’t have to worry about the mechanics failing, and it’s so simple anyone can use it without instruction. It’s too heavy for me to operate on my own, but since I’m not driving someone’s always there anyway. I’d…[Read more]

“Optimistic purchases,” love that term Tracy. Your list sounds a lot like mine.

Any secret tips for the iPhone? I’ve figured out a few things but know there’s a lot to learn.

Julio, I splurged and went with the 12 Mini. So far I’m finding it manageable. At this point I wouldn’t say the accessibility features are any better than the Android but I’m still learning. Finally figured out how to take a photo with voice. So glad to have my wireless charging back.

I’m sorry you have to fight like this. What does your PAL say? Do you mind sharing what your primary insurance is? Maybe if others have the same they can share insights. I’m slightly confused by the tweet as you reference CVS Pharmacy. They couldn’t provide the medication regardless because ACCREDO is the only pharmacy that dispenses the…[Read more]

Not much has changed for me post-vaccination. I still don’t feel comfortable being in restaurants or busy stores. It has given me a little sense of relief that others actions won’t affect me as much. For example I have a caregiver vacationing in Florida. Prior to getting the vaccine I would be very anxious about that. I’m still concerned but…[Read more]

Group hug!

Oh, I get where you’re coming from.  I get that vibe from my own family sometimes.  I still go to my mom’s every other weekend.  Although I do understand it is more physically challenging to take care of me than it used to be for her I know she enjoys having me.  Of course it seems like my sister always shows up when mom’s taking me to the bat…[Read more]