Kelly Miller

That really is frustrating I imagine, DeAnn and Kip. I’ve been taking Evrysdi since Xmas Eve, and my stomach issues are a little different. Like you Alyssa, I normally don’t go but every so often, but this is making me go about once a week. I don’t take anything for constipation or eat any differently to go more often b/c my body is adjusted to…[Read more]

Well, I have to say Brianna that probably takes the prize! Was this your personal doctor or was it Genentech? I can’t imagine, or maybe I can, what I would say if my doctor told me something similar to that. I’m afraid I wouldn’t be very nice; however he would be within the parameters of his job, easily saying it’s how he’ll determine if he thinks…[Read more]

Thanks DeAnn.

I applied for a grant thru Team Gleason. Steve Gleason is an ex-football player for the New Orlean Saints who was diagnosed with ALS a few yrs ago. He started this foundation with some other NFL friends to help those with ALS to figure out the new world of disability for them. It talks about things like different aspects of…[Read more]

Congratulations DeAnn! Definitely let us know about it.

I’m scheduled to get my first dose on Tuesday. This will be my only treatment b/c I opted not to go for Spinraza. I really didn’t want to deal with the injections since I have so many bones in my back from my spinal fusion. I was also extremely worried about the side-effects. I couldn’t get…[Read more]

I just ordered a new chair, and I was told insurance would not pay. Since it’s been denied every time on several  different brands and with several vendors in the past, we didn’t even try (I have Medicare as primary and private as secondary.) My guy at NuMotion suggested a foundation that I never would’ve tried b/c it’s not directly for SMA but…[Read more]

I was originally diagnosed in (she whispers behind her hand) 1968, so it was done by biopsy. At that time (age 5), they said I had Werdnig-Hoffman (what they used to call Type 1 before SMA), but to explain why I wasn’t severe enough, they said it was “arrested.” It wasn’t until I was a Junior in high school, that they came up with SMA Type 2 b/c I…[Read more]

I’m waiting for an approval on my insurance for Evrysdi. I’ll be curious if there’s any kind of “slump” with it. I don’t know if the dosage will be once a day or more, but I guess if it’s only once, there could be one toward the end of the med cycle.

Brianna, when you say your mom has handled everything, what do you mean by everything?

How exciting, DeAnn, that you are getting almost a whole new life very soon! I remember when I was in college, my Psych 101 class taught us how any kind of change, even something good like marriage or a promotion, can bring stress into our lives. I’d be more worried about you if you weren’t feeling some stress.

I did a demo with the JACO a few…[Read more]

Alyssa, I’m so excited to hear about your new job! I think both men and women who have disabilities struggle with the way “regular” clothes fit them. I for one look forward to seeing what you come up with as soon as you’re ready. Keep us posted.

I had a totally unexpected stay beginning January to end of April, which entailed getting a trach and now on a vent at home (a story for another time). Unfortunately I had to try to remember everything to take while I was struggling to breathe. I think preparing a bag ahead of time, even if you have to add to it as you go out the door, is a really…[Read more]

So having worked for Social Security for 17 years,  12 of which were spent doing a lot of Medicare, I can say it will definitely be Part D. The only way it would be Part B would be if we get the medicine administered to us while at the Dr office by the staff. Any meds we give ourselves is going to be under Part D.

Now, today I got an email…[Read more]

I’m so excited, I can hardly wait for the two weeks until they actually get the med out! I didn’t want to do Spinraza b/c of the whole having to get injections in my spine, not to mention my fear of possible side effects. Ever since I first heard they were investigating a possible drug that would be taken orally or thru a g-tube, I’ve been…[Read more]

I was prescribed gabapentin a couple of years ago by a palliative medical doctor. I was trying to find that perfect combo of meds to deal with my pain, willing to try anything at that point. I started feeling the side effects pretty much right away. It began with the dizziness others here have mentioned which quickly turned into nausea. I also had…[Read more]

Brianna, check out the post just recently by DeAnn regarding SPC’s!

Like Rachel said, it is an awful lot to post if I post my whole story about my SPC. But for the sake of informing people who don’t know, I will give you what I can.

Much like you DeAnn, I went YEARS doing it the old-fashioned way of sitting on the pot. It was rough at times when a friend had to lay me on the public bathroom floor to get my pants…[Read more]

That’s a suprapubic catheter. Are you familiar with those?

Halsey, I will definitely be talking to you when I get ready to get my new one! I don’t know a lot about Quantum, but I’m willing to find out. I can say very assuredly that I do not want another Permobil. I feel like they misrepresented my situation to me. They told me Invacare wasn’t making any more and that I couldn’t get them. I know they had…[Read more]

Alyssa, let us know how that works when you get the joystick adjusted.

I’ve had problems with running into walls & things since I got mine. One time, in my doctor’s parking lot, I hit the back of a parked car so bad I thought my hand was broken. It had been sitting normally on the armrest when I slammed into the back right of the car, tearing off…[Read more]