Mike Huddleston

Lupa, I’ve had gel armrests on 3 different chairs now, and I absolutely love them. They’ve kept my elbows and wrists from getting those horrible pressure sores I used to get from that hard plastic. That stuff should be outlawed! The gel is still firm enough to support, but it’s also giving enough to keep it from hurting. You might check those out.…[Read more]

DeAnn, I’m dealing with something similar. My new chair was delivered before Christmas minus the seat cushion and sip-and-puff controls. They were forgotten when the ordering happened. I wasn’t upset because I like being able to study the chair before getting into it, having that excuse of missing parts. But at some point, it gets to be too long…[Read more]

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]

Great idea! I’ll look into it.

Thank you Kip! Happy new year!

Hi Aimee! Thanks for reaching out.

I had to have spinal fusion surgery in 2005, and it’s one of the hardest things I’ve ever done. It’s intense pain, and your daughter is a champion.

The best thing you can do is keep encouraging her and supporting her as best you can. I will say from experience that despite the pain, the surgery was well worth…[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]

Hey Kip! I just DM’d you the link.

Love this Jim! Thanks for the encouragement.