Kelly Miller

We like to make all kinds of peas & beans in the crock pot. Our most recent was black beans with onions & green bell peppers & spices. We then serve it over rice. I can’t chew the meat very well, but Jack likes andouille sausage in it also. It gives the beans a good flavor. A few weeks before that we made lentil stew. It’s pretty much lentil soup…[Read more]

Thanks for bringing this up Lupa! I had gotten it confused with Zolgensma, so I was thinking it would be a one time deal. Hope I didn’t confuse anyone – except myself, lol.

I’m so glad you brought this up DeAnn because I have an appt also with my new neurologist here in Florida on Dec. 10. Like you, I have Medicare as my primary insurance, but mine is straight Medicare, no advantage plan. I also have Blue Cross Blue Shield from my former job as a Fed employee which covers what Medicare doesn’t pay & it covers all my…[Read more]

I was so very sorry to read your post tonight, DeAnn. I’ve had pets for as much of my life as I can remember, and they have always been a very special part of our family..My husband & I have been thru a couple of dogs in our 22 year marriage, and each death has been just as heart-wrenching as the others. I’ve never had a service dog, but I can…[Read more]

Olga,

I’m sorry to hear your brother can’t have the Spinraza injections as he would like. I’ve also had a spinal fusion that put lots of pieces of bone in my back, along my spine to make it grow straighter. Because of this, any kind of injection in my back is next to impossible. Drs. have tried before to do epidurals and cortisone injections with…[Read more]

Thanks DeAnn for putting this video on here. BreathewithMD.org is a fantastic reference for materials that help with doctors & hospitals when it comes to the respiratory issues we all have at one time or another. I had been dealing with pneumonias & many bouts of bronchitis throughout the yrs. without even knowing about the supplemental oxygen…[Read more]

Hey there Alyssa! Glad to meet the person behind that column. I’ve enjoyed your writing very much and I’m sure you’ll have some great nuggets of wisdom to share with us. It’s always weird to tell people about yourself on a forum like this because it seems so egocentric. I guess I’ll say the usual 1st: I have SMA type II. I was diagnosed originally…[Read more]

Ryan, I’m really sorry to hear this because I always look forward to reading your advice and opinions on all of our topics. However, I do understand that the need for change sometimes comes without warning, without permission. I hope that whatever you do from this point forward will be fulfilling for you and bring you happiness. Our SMA world is a…[Read more]

Thanks Kevin, but I found my answer. It actually states on CureSMA’s website, in a section about Risdiplam, that it can be administered thru a feeding tube!
I started doing a little research after I wrote my question. Didn’t want you to look unnecessarily.

So do y’all think the Risdiplam could be administered in feeding tubes? I was thinking about that this morning. I mean if it’s oral, you should be able to do it that way, right?

I would be so down with taking Risdiplam! I would say the major reason I haven’t pursued Spinraza is because of the injection issues. I had a spinal fusion at age 10 when they put an incredible amount of bone fragments from my shins along my spine, from end-to-end, billions of them from the very tip in my neck to the very bottom in my butt. So…[Read more]

Crystal, I was wondering (& I think DeAnn mentioned it) – have you thought about getting a peg tube in your belly instead of having the NG tube? That might be what’s causing the inflammation. Maybe your throat is just tired of it being there. They make the peg tubes so small now. In fact, I have a mic-key (which is like a little button that s…[Read more]

Crystal, I know that must’ve been terrifying in the middle of the night, all by yourself. I can only imagine how I would have felt my own heart racing in that same situation. Don’t hesitate to say (or write) whatever you need to here just because you think it’s going to be depressing for us. I feel like that’s what these forums are for, giving us…[Read more]

Every time I think about you, DeAnn, hibernating in your home all winter long to avoid the heavy drifts of snow of Minnesota, I always wish I could send you some of the warm weather we have in the southern part of the United States. I absolutely get the frozen tears of your plant, and possibly yours, as you look out frosted windows for the next 6…[Read more]

Got mine last week. I’ve managed to stay away from ANY respiratory issues for the past FIVE yrs! Let’s hope year #6 is here.

Gosh, that is a bad problem to have. I love my leggings also, but I’ve always been able to find ones that didn’t hurt me. Mine have elastic that stretch a little if I need it to (on those “fat” days). I also don’t have that bad scoliosis since I had my fusion very long time ago without the rods.

Crystal, can’t they put a feeding tube into your stomach instead of you having to have the NG tube? That way you could have better nutrition rather than just fluids. And, you wouldn’t have to keep one in your nose & down your throat! That must get tiresome after a while. They even have little buttons like I have called a mic-key where there is no…[Read more]

I don’t know, do you think maybe one size bigger would help?

Ryan, I started having the same kind of problems you mention about 20 yrs. ago (age 35). I have since gotten a feeding tube (mic-key) in 2014, but until I did, I developed a way of tilting my head slightly to the right & down to get the food to go down. As it gradually got worse with more varieties of food getting stuck, I developed another…[Read more]