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Thursday, October 11, 2012

Why DBS?

I am a week away from DBS surgery. I have had a lot of people contact me and ask why, specifically, I am considering such a step now. To most, it seems like an extreme measure; a last resort, but it actually is a quality of life decision.

Even though I was only diagnosed with Parkinson's five years ago, I have had the disease for at least sixteen years. I had excellent results from medication when I first started taking it. The change in my physical condition after just five pills was miraculous and I wish I had before and after video to show you. 

I got by on just three doses a day for almost four years, but then the disease progressed again. With Parkinson's; you develop symptoms then stay at that level for awhile; develop more symptoms and stay at that level for awhile; develop worse symptoms and stay at that level for awhile, etc. I am now in my sixth "get worse" period and my "stay at the same level" times are decreasing. A year ago, I was doing well on three doses; a few months ago, I was doing okay on six doses. Now, I am not doing well at all. (Every person with Parkinson's progresses differently.)

If a picture is worth a thousand words, then this video should explain why I am having DBS. This video is eight minutes long and shows a typical day for me. I repeat the same routine (typical things done daily) over and over again, every hour or so. Rigidity and slowness (bradykinesia) are difficult to capture, but I think I've done a pretty good job. Have a look:




If the surgery goes well, I expect to have an increase of six hours of ON time a day and hopefully eliminate some side effects (foot cramps) at the same time, which would definitely improve my quality of life. 

You can find all my videos on my YouTube channel:
Clicking on the colored words will open a new window and take you to a different story or link.

12 comments:

  1. Good luck...please share your experience. I'm on the same path. Prayers and Smiles
    Ron

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  2. GREAT blog, as always! Thank You for your open sharing on this topic. You are in my thoughts & prayers as you prep for DBS surgery.
    Cyndee via Twitter

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  3. Bev, you are an amazing educator & brave person. I hope the DBS works miracles for you! Hugs, Robyn

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  4. Thanks. I see so much of my Mr P in your video. Amazingly he keeps moving, though it must be so hard. All the best for your DBS.

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  5. Just watched the entire video. Very helpful, and brave of you to share. Thinking of you as you prepare for next week!
    Parkinson's Disease Foundation

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  6. Thanks for sharing!!!! Quality of LIFE IS what LIFE is all about!! You GO FOR IT! I'm cheering for ya! Can't wait to see the "after" surgery video.
    Penny B

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  7. Really interesting video Bev, you're very brave xxxx
    HB

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  8. You did a great job on that video, Bev. When did you do that? Your voice sounds very strong and clear on your narration too. I can't wait to see the "After DBS" video!
    Shirley

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  9. michaeljfox.org ‏@MichaelJFoxOrg
    @YumaBev We love your perspective (as always) and hope to feature this post on our blog next week. Happy Friday!

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  10. Speaking for myself Bev, DBS was a no brainer (I know the pun wouldnt be lost on you). In all seriousness, Even though I still need a little tweaking, I know it was absolutely the right decision. Where prior to the procedure I couldn't get a spoon of soup to my mouth without spilling a good portion of it on myself(I called it my Parkinson's diet!),I ate with chopsticks last week. My quality of life has improved dramatically.
    The fact that I can write this note at all with out having to rewrite a dozen times speaks volumes. My on periods have increased considerably, and the dosage of meds have decreased. I'm so happy for you Bev. Lynn and I are planning to see you soon...and I want the 1st dance.

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  11. Lynn & I would love for you to join us for a mile or two on our ride across America. No pressure, let us know.

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