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Hey Mike. Out of curiosity, do you lay in the trendelenburg position after your injections? You’re supposed to lay down flat for an hour after the lumbar puncture, yes. But my surgeon always slightly puts me in trendelenburg to get Spinraza moving around in my spine. I’m not sure if there’s any validity to it or if it actually accomplishes anyth…[Read more]

Hey Mike!

I have always gotten mine through cervical injections. I’ve never had any side effects and I’ve definitely experienced benefits. I’ve written about it in my column. Here’s one from a while back. It’s an option worth at least discussing with your neuro.

Hope this helps!

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 your reply and thoughts Lupa.  I was not aware of that for Keven, so hopefully he can chime in. Definitely understand there is a potential risk to gains by switching the injection site, but didn’t know what that would be if it was only one out of every three. Additionally, I do use a power chair full time, so since I’m not full load…[Read more]

I think Kevin here has his injections done in his neck since the usual lumbar area wasn’t possible. But I don’t know that changing injection sites would do much. How did they show the Spinraza was concentrated at your injection site? I’ve never had any tests that would show something like that. But if it did affect different muscles depending on…[Read more]

we haven’t found one yet I don’t think, but I know my mom wants one. We have an ear one and it doesn’t work real well. That’s a great idea to have them check their temps though! No one is allowed in our house if they have or had a temperature recently, unless of course they live here. Then their just not allowed in my room unless they absolutely have to.

If possible, I’d suggest getting the hang of it on desktop, as the website is more intuitive than the app, and it will show you all the features (example: click on one of the foods in your list, and it will show you the breakdown for just that item. Or click on one type of macro and it will show you your top sources from the day)

I’m another one with a useless dietitian. Welllllll…. I should not say she is useless, because she does write the scripts I need, but I learned to just tell her what I want, and overwhelm her (easy) with a couple supporting documents, so she doesn’t try to do something different.
If you are looking for a REAL food product, with a substantial…[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]

Hiya!

There are not many websites that provide customization options for wheelchairs. Sniff.

Two suggestions though:

1. Do an Etsy search for wheelchair accessories  – some options should pop up such as joystick knows, seat covers and armrest covers, etc

2. Visit this site for a few options:…[Read more]

I’ve seen a dietician one time, and that’s all I found tolerable. I tried getting information regarding switching from my formula due to severe stomach pain that had developed over time with this same fiber-rich formula. She didn’t want to acknowledge at all that it could be the extra fiber over the previous year causing, not only my pain, but…[Read more]

I don’t find dietitians very helpful, either. They don’t understand about estimating the actual amount of movement we have (or do not have) compared to an average person.

For me, taking a lot of fibre turned everything into my intestines like cement. So instead of things moving along nicely, things ground to a halt. Maybe that will work, in…[Read more]

Seconding what Lupa said. In fact, I take fiber to help me go to the bathroom, not slow things down. If I take too much of it though, it can cause overactivity in my intestines.

I have seen a dietitian before, but I haven’t found any real value from it. Especially since I only eat by mouth, it’s mostly things I can research on the internet. I thi…[Read more]

Be careful with fiber. A few years ago I tried taking some since I was having some issues in the bathroom. Over the next couple weeks I started feeling very woozy and lightheaded, especially while on the toilet. I felt like I was falling all the time. I then realized it started just after I started taking the fiber. Once I stopped, the weird head…[Read more]

Love it! I have the strength and agility to use it and have watched the journey as Zach had perfected it.

That said, I have no place to store it.

I do see this as a great tool to enable someone who needs to use a wheelchair full time to be outside, perhaps on a less accessible trail with nature around.

Although there are other offroad chairs,…[Read more]

It’s not haha. I made a joke about that in the intro.