Activity

Fortunately I have a great team, so haven’t had much issue…yet. I’ll be starting the process sometime next year so we’ll see. I’d like a few more features, so that can be a pain to get approval. Do you see a physical therapist or occupational therapist? They’re evaluation can go a long way in advocating for medical necessity along with your…[Read more]

The last time I got a new chair, my insurance denied me multiple times. I ended up getting my neurologist on board to help fight our case. It was a pain, but unfortunately insurance companies have gotten worse about approving chairs. I would recommend seeking help from your medical team, especially if you have a specialist or a primary doctor you…[Read more]

I guess I should clarify about my Medicare experience. I have a Medicare Advantage plan, so we’re dealing with a regular insurance company, not Medicare directly, that’s where the problems are happening.

Getting blood drawn is a nightmare! I never know if I should warn them I’m a difficult poke or not. Usually I can’t get away with a finger poke unless I’m in the hospital and they’re tired of vein searching. The finger poke thing worked against me during a hospital stay though. My potassium levels would fluctuate too much. Finally I figured…[Read more]

Interviewing has never been my forte. My best advice though is to go with your gut. If you don’t have good rapport with them right off the bat they can be difficult to work with. I tend to talk through my routine and give ample opportunity to ask questions. Many people don’t interview in their homes, but I like to so they can get an idea of…[Read more]

One of things I like to ask is if they have heard of SMA and do they know anything about any of the machines we use. It’s fine if they don’t but it’s nice to know how much we’ll need to teach them. I also like to ask some questions about there lives outside of work to start building a personal connection. Things like their kids, pets, or interes…[Read more]

Thanks DeAnn! This was definitely a rough one for me! I’m very thankful to be back to my usual self!

Congrats! I was told that insurance is covering them about 50% of the time, which I was pleasantly surprised by. Good luck.

Hey guys, I’m so excited, I have a demo scheduled for September 24th! Funding may be a possibility as I guess Minnesota Medicaid has covered them. Fingers crossed!

I think it is great that you’re standing up for yourself and reminding people that there is no one who knows you and your body better than you do! They might not like it, but at least they might understand better when they realize you were right.

Most of the times I need to advocate for myself are related to nursing care. Currently, I use a r…[Read more]

Adyn and her family are good friends of ours! Brian actually went to high school with my mom. It was a pretty small town so we find it ironic that they both ended up having kids with SMA.

As for being involved in a community, I’m extremely involved in an organization called Turnstone which I know I’ve mentioned here a few times. The people the…[Read more]

We potty trained our daughter (SMA Type 2) just as we trained her unaffected siblings. The process was quick as she picked up on it readily. Now that she’s nine we have her in diapers overnight, when we take long trips, or will be away from her for a length of time. She seems to have go to the bathroom more often than her siblings…not sure why, though.