Another typical week: Part deux video

Hi all,

Had a great question about how I charge my DBS stimulator last week and why I watch movies while I’m charging. So, my dad, mom, and I made a video.

Here’s the thing, it’s tricky to get the charger lined up and staying in one place next to the stimulator that’s implanted in my chest. I always have a chest strap to help me sit up in my chair and we use that in addition to the harness straps on the DBS charger to help hold it in the right place. Then, the trick, is that I, the one with uncontrolled movement, have to try to sit kind of still so that the charger stays on top of the stimulator. The only way we’ve found that works for me is to be watching a movie or tv show. My body is usually a little calmer when I’m watching something. Usually, I need to charge a 2-4 hours every week or two, depending on how well the battery charges.

This is the big week – GO VOTE!

Justin (& Mom)

p.s. Want to learn more about Deep Brain Stimulation (DBS) and why I have it?

Faith in the Midst of Bewilderment

Frequently Asked and Unasked Questions

YouTube video of me 5 months after my DBS surgery

Another typical week

Just a reminder – my typical weeks are why we need to protect Medicaid and make sure we have access to good, affordable healthcare!

Speech therapy on Tuesday. Communication device fell off my chair but fortunately seems to be working just fine. My speech therapist made some brilliant changes so that I can’t accidentally hit the speak bar when selecting a word-prediction choice. And, I can more easily program my own buttons now on my Quick Stuff page. Watch out world!

Also, got my thigh strap contraption repaired while I was speech appointing. It broke last week.

Appointment with my complex movement team doctors on Thursday. Trying some new Deep Brain Stimulation settings. 4.5 volts seemed to be too high and ended up making my movement even weirder so went back to 4.0 volts. In a couple weeks, dad will sneakily without my knowing switch to a 3rd new setting that turns on 2 different leads that are deep in my brain. One of the coolest things, was that my neurologist did a “software update” on my stimulator implanted in my chest and now the stimulator should last for another decade before having to be replaced. We had thought that it would need replacement after 7 years which would have been in about another 4 years. The fewer surgeries the better since I have had issues with staph infections. The grand experiment of Deep Brain Stimulation (DBS) continues.

Friday night was Dead Pool 2 night while charging my DBS. It takes about 1-2 movies a week to charge my DBS.

Upcoming surgery on November 9th to remove my lower braces – and an out-of-whack lower tooth. YAY!!!!!!!

Had an awesome end of the week when I went door-knocking for Ami Wazlawik who is running for MN State House Representative for 38B. She’s awesome! Made my dad come along and help out this time!Back of man and Justin in his wheelchair walking down street

(P.S. I’m actually at my pre-op physical when this is being posted on my blog. The magic of scheduling blog posts on WordPress!)