Never give up – GOAL!

Last Saturday, AFC Wimbledon, a third-tier fan-owned football team, beat West Ham United, a Premier League team, in the fourth round of the FA Cup. I don’t want to alienate people who support West Ham, so I am not going to talk about the game. Instead I am going to tell a personal story about never giving up.

Five years ago, I tried deep brain stimulation (DBS). I wanted to see if it would be helpful in downplaying the jerky movements that are completely annoying and make it hard to do what I want to do. Two weeks after the second surgery, my stimulator was inflamed. I went to the emergency room right away and found out I had a staph infection. I had two choices: take everything out (stimulator in my chest with wires threading up my neck to the top of my head and then leads going to my basal ganglia deep in my brain) or keep it in for as long as possible.Justin laying in hospital bed, brother sitting in chair with game controller

I knew that I would have to put heavy duty IV antibiotics in my system, but initially wanted to take it out. I was hurting and you should never make decisions when you are in severe pain. Along with my parents and doctors, I decided to keep the DBS in as long as possible to see if it helped me more easily do the stuff I loved to do.

Flash forward three months, the infection couldn’t be managed with the antibiotics. It had traveled from my chest to my head and the DBS had to be taken out. The worst part was that it was working. I was sitting up on the side of the bed (check out the video links down below) and I could make a peace sign. You may think “big deal,” but it’s the first time I had ever been able to do these things. I could even flip people off – every 15-year old should be able to flip someone or something off occasionally.

One year later, I tried DBS again – without a surgical-site infection this time. I didn’t give up on my hopes that DBS would make my life a little easier.

Congratulations to AFC Wimbledon on making it this far in the FA Cup after losing almost all of their league games. Every Saturday, I watch them because I’m a huge fan. Many of my readers know that I’ve been dealing with a ton of leg and foot pain. Whenever I watch AFC Wimbledon, my pain is pushed to the side. My message to AFC Wimbledon – don’t give up!

You’ll find me at The Local Restaurant & Pub in Minnesota on 2/16 cheering on my favorite English Football team!

Justin watching tv in pub

Update on the foot/leg pain

No botox this week because doctor wants me to see another orthopedic ankle/foot specialist to determine what we do with my semi-dislocated-ish toe. It was the coldest day ever in Minnesota for this doctor appointment! Negative 50 Fahrenheit windchill!!

Dad putting hat on Justin who is bundled up in wheelchair

YouTube videos of me after DBS

Justin talking about DBS between the first DBS Stage 1 and Stage 2 surgeries

Justin sitting 7/20/15 – sitting 5 weeks after the second DBS surgeries

Justin sitting 5 months after DBS

Previous posts about my DBS story

Faith in the Midst of Bewilderment

Frequently Asked and Unasked Questions

 

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!)