The effects of DBS on the motor symptoms of Parkinson’s Disease

I made this video today as I was curious about what would happen when I turned my neuro-stimulator off.  I am flying to Sydney tomorrow for a conference and didn’t want to be blind-sided if the screening device turned my DBS implant off (which has been known to happen). I hadn’t turned it  off before, so this was quite the experience. Cheers, AJ

EDIT:

I’d just like to clarify a couple of things about the surgery I underwent, the effects of which I recorded and posted online.

1. This is a treatment, not a cure. Like all treatments people respond differently. Results may vary.

2. DBS is not suitable for all Parkinson’s patients, but a select few whose motor symptoms cannot be controlled by medications. It does not stop the disease, nor does it slow it down, it acts as an adjunct therapy (in my case) to medications. Some people can get off the meds after DBS, I am not one of them.

3. DBS does not help the many varied non motor symptoms of Parkinson’s. In fact, it could make them significantly worse. This is why stringent suitability criteria are applied.

4. If you have PD listen to what your doctors are telling you, they know what they are doing and they’ve seen it before. This is not a miracle cure, it is a proven treatment which happened to work for me quite spectacularly, but that was because a subset of my symptoms were ones most likely to respond to the surgery. It’s not a case of I got lucky though, I was carefully screened for suitability.

Cheers for all your support, it is very humbling!

Comments
43 Responses to “The effects of DBS on the motor symptoms of Parkinson’s Disease”
  1. Very well done! You make an amazing argument for the benefits of DBS. If you have a chance, please drop by my website and look it over. I would be interested in your thoughts.

  2. Julie says:

    Pretty amazing

  3. Steve Pritchard says:

    Hi AJ, you are the man! I have not had a chance to met you but I have heard a lot of great things about what you are doing. I was very taken back with your video. All the best to your family espesically Lynn. Look forward to catchin up when We’re in NZ next.
    Inspirational stuff matey!
    Regards
    SteveO, London

  4. Scott says:

    Great video,

    thanks for this

    I’m 51and was diagnosed with PD 12 years ago. My Dr. is recommending the DBS and I’m seriously considering it.

    I’m curious on how you handle traveling and going through security at airports.

    What kind of difficulties have you encountered?

    Thanks

    Scott

  5. yopd1 says:

    Thank you for posting this. It helped many in my family to understand why I wanted to go through with “Brain Surgery.” I actually just passed the screening process and am now awaiting word from my insurance on whether they’ll approve the surgery (I passed the neurology screening, but not yet the insurance screening). My doctor has said that I am a very good candidate because I have very good dopamine response, I just take a lot of it now. I was also diagnosed with YOPD at 34 and am now 42.

    On a side note, I LOVE New Zealand. I went on vacation (Holiday?) there in 1997 and have been trying to find a way to get back for a visit ever since.

  6. Max Roshensky says:

    As someone who is trying to get into the Medical Device field (I’m a Quality Engineer). It is truly inspiring to see that a device can have that much of an effect on someone with such a disease. I’m glad it is working so well for you, and thanks for the demonstration.

  7. SMS says:

    I can’t say anything but thank you for posting this. It’s inspiring, though-provoking, and hopeful for those of us whose loved ones live with PD.

  8. Helen says:

    Thanks AJ. That is just what I needed to see. When I first met you at the Parkinson’s UPBEAT weekend we had in Palmerston North I wondered how you would survive. I have been asked to think about having DBS and I have been a bit apprehensive. Seeing your video clip has made me think I will go ahead if I am able.

    All the best for you and your family.

  9. Claire says:

    I wish this had been available years ago. My mother was diagnosed at an unusually young age and suffered with Parkinson’s Disease for many years. She passed away in 1987 at the age of 58. I am so glad to see that so much progress is being made in the study of this horribly debilitating disease.

  10. Chris says:

    AJ:
    So impressed with your video, particularly how dispassionately you deliver SUCH a powerful message regarding the benefits of DBS. My wife was diagnosed with PD summer of ’06, and though she’s so far pretty well controlled using a combination of drugs, we’re well aware of the inexorable progress it’s going to make against her neurological stability. Your video was a hugely brave thing to make, and we so applaud your willingness to share what another person might have considered to embarrassing to display. Thanks, and good on you, mate.

  11. Seth says:

    I had the DBS almost a year ago for a different type of dystonia (DYT1). Great video, and hopefully it will help other people learn about all of the available options. Best of luck in your journey!

  12. Just wanted to thank you for your generosity in posting this. All this best to you and your family.

  13. christigracd says:

    Amazing, thank you so much for sharing. Do you know if this device has been used for spasticity/ tremors as a result of TBI?

  14. Laurent says:

    Thank you for having the courage to post this, and good luck with dealing with your disease.

  15. CM says:

    That is amazing. Congratulations!

    My mother doesn’t have PD, but does have really bad MS. I wonder if it would have similar beneficial effect for her. Unfortunately, she is in her 60s, and the MS have ravaged her body for decades, and even if it did work on MS, the damage is done. Too late for her.

  16. Chris says:

    This video is amazing. But not as amazing as the effect of the DBS implant. Im absolutely astounded. The question I have is how can we contribute to research such as this?

  17. Jenni I says:

    Thank you for posting. My father has Parkinson’s and it is so important that awareness is raised.

  18. Merlvin says:

    Thanks man. This is amazing. As a health professional I have learnt something from your video. I tend to deal with the pharmacological approaches to PD but I there’s obviously a case for surgery either as an alternative (better?) or to greatly reduce the need for medication as in your case.

    Thanks again for sharing

  19. Wade says:

    AJ,

    Thanks for the demonstration! I too have a Medtronics device implanted, however mine is to relieve lower back pain. The technology Medtronics has developed is a true blessing! I’ve had my implant for three years now, and it truly is a life changing device. Congrats on finding a Doctor who wasn’t afraid to suggest providing this device, and congrats to you for having the courage to have the surgery to receive the implant.

    Wade

  20. X says:

    I’ve never posted on stuff like this before but thank you for sharing. You are a trooper for showing us this.

  21. Dave says:

    Thanks for sharing.

  22. I saw this video shared on Twitter AJ. You are one brave and generous man. I have no doubt that you have helped many, many people with this video and given them hope. Keep it up.

  23. Michele Cooper says:

    Thank you for sharing your experience and what knowledge you have gained over this disease. Im very interested to know why you opted for a neuro-stimulator. I have a brother who has just been diagnosed with early stages of Parkinsons and I’ve been trying to find out as much as I can. My brother’s neurologist is trialling him on Madopar which Im am a little wary about as I have read that although it may help with the shaking the long term effects are pretty awful. I am finding his neurologist quite unhelpful when it comes to alternative ways of dealing with his disease.

  24. Leanne says:

    HI AJ, my husband also has parkinson disease and the effects on him are his walking (or lack of it), he doesn’t have the tremors but does have speech problems and the neck movement. Do you think this may benefit him and help him with his walking?

  25. Nikolai says:

    Thanks for this. My mom was diagnosed with PD a few years, she’s been a trooper but is understandably very apprehensive about the future. It’s really great to know that this neuro-stimulator exists.

    Keep fighting the good fight!
    Nikolai

  26. Amazing work AJ. There have to be thousands of sufferers who will be inspired by this. I remember you showing me the video of someone else showing off the technology before you had surgery. Incredible to see the positive effects on you. Just awesome. X

  27. Amazing work AJ. There have to be thousands of sufferers who will be inspired by this. I remember you showing me the video of someone else showing off the technology before you had surgery. Incredible to see the positive effects on you. Just awesome. X

  28. Wow wow wow AJ. Incredible. What life changing surgery that has been for you. The change in your quality of life is immense. The medical team, you and Lynn and the kids are amazing.

  29. Wow wow wow AJ. Incredible. What life changing surgery that has been for you. The change in your quality of life is immense. The medical team, you and Lynn and the kids are amazing.

    • AJ says:

      Thanks Jacs, yup it has made an indescribable difference really.

      • Steve Byers says:

        Hi AJ that is incredible and thank you for the message
        so well delivered and incredible to see the live version on film
        they say that a photo is worth a thousand words and that clip certainly proves that
        Good Luck and thank you
        Steve

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Parkinson's New Zealand has an amazing Field Officer service which provides education, information and helps people make informed decisions about living with Parkinson’s. I am proud to support their work.

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