What’s the Frequency, Kenneth?

Imagine driving a lonesome desert highway, a couple of hours past midnight, searching for some distraction to help you stay awake and keep you from driving off of a cliff to a fiery grave. None of the FM stations are working and the only other music you brought is an old Nickelback CD. As a last resort, you switch to AM, hoping for a late-night talk show or even a sports broadcast. At first, all you hear is the hiss and pop of static coming through the speakers. Undaunted, you continue tuning until finally you find an oldies station, playing music that takes you back to a simpler time of life. The music isn’t in stereo and it still has a little bit of static playing in time with the beat, but it is exactly what you have been hoping for to keep you moving.

THAT is what it felt like at the initial programming of my Deep Brain Stimulation (DBS).

To be honest, I wasn’t very optimistic about this whole surgery thing. This is my fourth year with Parkinson’s/Dystonia, and I have yet to feel any relief from it pharmaceutically. Lately I’ve been running my hand over the new scars on my head, feeling all of the bumps and dips, wondering what the hell have I done? There are probes in my head! There are wires running down my neck into a battery powered circuit board that can control my brain! It sounds like a bad movie plot on the Sci-Fi channel. At this point, there was nothing left to do but turn it on and see what happens…

At first, all you hear is the hiss and pop of static coming through the speakers…

I must say it was pretty amazing. After being Bluetooth connected to his laptop, my Neurologist “tuned” some functionality back into my left hand, using the tried and true Eye Doctor questions “number 1 or number 2?” to dial in movement and a flexibility that I haven’t had for a couple of years. After he got it to a stable setting, he was then able to “rotate” the focus and turn down my tremors to a mild flutter. I’m in awe. It’s not perfect; there is still some “static” to work out. This is a long process to get me fully dialed in, possibly a year or two, but I’m all in.

I can’t wait for my next “tuning” in July.

26 thoughts on “What’s the Frequency, Kenneth?

  1. I’m glad to here you found something that helps and it sounds real promising. I’m not one for Facebook but Alex shared this with me, sounds like you’ve had a tough go of it for the past several years. Stay strong and kind.

    1. It’s real good to hear from a long lost friend. I’m searching for that simple retirement life that you have there in Montana. I don’t FB either. Just enough Instagram to keep a small link to friends. Love watching Alex and her cute little family grow up. Hope all is well with the Schramm’s.

  2. Brian
    I’ve followed you on Insta for some time as a result of my husband’s CBD diagnosis. His right arm is affected with dystonia, tremors and ever increasing pain. Do you have other symptoms of parkisons or just the dystonia. So glad you’re seeing some results from the. DBS. Is it used for CBD patients as well? Just wondering about the possibility of help for my husband.

    1. Hi Teresa. My main symptoms are dystonia, including muscle contraction and twisting and joint locking, tremors, and chronic muscle pain. It’s primarily on the left side, but I have some symptoms beginning on the right now as well. I also have some minor memory loss and voice softening. DBS seems especially effective for Dystonia, and I would think it could help your husband as well, although I’m not sure if the same areas of the brain are affected with CBD. I also don’t know if it will affect apraxia or some of the other sensory problems. It would be worth looking into. I hope this helps.

    2. Teresa,
      I remember when they misdiagnosed Brian with CBD. I felt like someone, who didn’t have permission, set a timer and I didn’t have control over pushing the pause button. It was so weird to be faced with decisions of changing life insurance policies while jumping on our bucket list. For memory, we made a New York trip (a place we always wanted to visit) within a month or two of his diagnosis. It’s hard to see your spouse in pain. It’s hard to know when to make light of it and when to be silent and just let it be. If you ever need someone to talk to, I’d be happy to listen and help any way I can:)
      April (Brian’s wife)

  3. Hey Brian … I think of you (and April of course) every day ! You have had a hell of a ride without that radio station tuned in and I love your description of what this is like ! So perfect ! You have been quite patient and it sounds like there is now that slight tuning in of that radio station. I am soooo excited that you are getting results ! My prayers will always be there for you ! Stay strong and stay healthy !

    1. We couldn’t have started this ride without your help Coleen! We have really appreciated your support through this frustrating journey. Thanks for being such a great cheerleader. 🙂

  4. We’ve been praying for you. Can’t hurt. We seem to do it a lot. I’m glad the tuning went in a positive direction and hope that future tunings continue to be helpful. You could write a song about your desert night drive analogy. Remember to include a line about the warm smell of colitas in it!! Could be a hit!

    1. A little prayer never hurt. I was thinking of taking up the ukulele. Maybe songwriting is in my future. It’s one of the few low paying jobs I haven’t tried yet. But what rhymes with colitas? I think maybe that line has been used somewhere…hmmm.

  5. Brian, you continually impress me with your ability to express yourself in writing. This analogy is PERFECT!!! I am feeling so hopeful as I know you are too. Here’s to a much-improved future!!

  6. Brian you have been on my mind so much lately. This sounds like good news! YEAH!!.. Keep up the good work and we will keep you in our prayers.. I love hearing about your family.. the kids are growing up so fast and now have babies of their own.. Life goes by too fast!.. Hang in there champ!

  7. Brian and April I will continue to send prayers in your behalf for comfort and understanding, relief from pain, the necessary energy to keep moving forward, and always hope. Keep your trust in the Lord. With the Lord by your side you will see progress and joy. May his love sustain you both through this chapter.

    1. Barb,
      It’s so good to hear from you!! As soon as your comment came through, Brian said “April, it’s Barb. You can do the honors. He knew I would want to do that.

      I like the way you referred to this part of our journey as a “chapter”. Isn’t that so true. Hoping this book/journey continues with a positive spin through the rest of this book. After all who doesn’t love a good Happy Ending!!

      We sure do appreciate your friendship, encouragement and support. Take care❤️

  8. so good to hear that your getting tuned in! What a ride you have been on and continue on. I have to say I don’t know much about what you have, but it sounds so difficult. You and April have stayed so positive and proactive. Many prayers are being lifted up for you and your family. Continues success. Would be good to see your faces around a family campfire. We are keeping the mountain clean and safe for your return someday! Love you both very much

    1. Well, we both know I’ve been a little “out of tune” for most of my life. It’s about time I found a good station to broadcast. Wishing I was on the mountain fishing right now. Soon, I hope.

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