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Found 9 results

  1. Last October I posted about a problem I had with severe freezing of gait. It started with pain in my lower back from a pinched nerve. Allowing it to go on for months was a mistake. Eventually "traction" at the local hospital physical therapy clinic has stopped the pain and I maintain relief with an inversion table. But...once the freezing habit was embedded in my mind I couldn't let go of it. Tight, narrow places to walk were the most difficult. DBS in 2011 and again in early 2014 (second side) have blessed me with incredible results. 25 down to 5 meds per day, for example. When I turn one of the stimulators off, now in less than 1 minute I can't move the fingers on one hand at all. So, I went to my programmer at Cleveland Clinic, and then to the University of Toledo Medical Center to see if a programming change would help with the freezing. After 3 different sessions I was beginning to believe that DBS simply couldn't help with a freezing problem. In fact, I read online where in some cases DBS could sooner help induce or support freezing. At that point someone on this forum (PatriotM) helped greatly by mentioning David Zid (author of the Delay the Disease program). A one hour session with David in Columbus worked miracles for me...for 2-3 days. Then the effectiveness faded. I was convinced that David's therapy worked, but I needed more of it, for a longer time period. (Signed up for LSVT, or the BIG therapy. Just finishing my first week, I'm confident this is going to take care of the "embedded memory" problem.) Then, online I read an article that was titled "Adjusting Deep Brain Stimulation Can Ease Swallowing and Freezing of Gait in Parkinson’s". My stimulators had been set a 130 herz (like the article said) since the beginning. I sent the article to my programmer at Cleveland and made an appointment. A couple of days ago she changed the herz settings on both stimulators from 130 to 100. The results are SIMPLY AMAZING. The freezing tendency was reduced tremendously instantly. Due to me embedding the habit for so long the LSVT is still necessary, especially at night when I'm off meds for 12 hours, 6 to 6. But the other thing that is blowing my mind is I feel more "settled". It's like there's a subtil stimulation that was happening inside of me that has settled down. It's fascinating how you read someone else's post, and can't at all relate...yet. For example, early in PD (diagnosed 13 years ago now) when someone would talk about "on/off" I had no idea what they meant. Oh boy, did I ever come to understand later! "Freezing" was also something I couldn't imagine. Now I do. The PD journey continues. Thanks to all of you who's posts have been so valuable to me as we all continue to learn together and do the best we can with what we've been given. Obviously, we are all very unique. I wanted to post this in the rare case that there's someone else out there dealing with the same challenge that this may also help. And, thanks for people in the medical field who are not only knowledgeable, but also humble enough to partner with us. My programmer at Cleveland could have resented my input if she had a big ego. She said she was considering going there (lower herz settings) anyway, and I believe her.
  2. Last October I posted about a problem I had with severe freezing of gait. It started with pain in my lower back from a pinched nerve. Allowing it to go on for months was a mistake. Eventually "traction" at the local hospital physical therapy clinic has stopped the pain and I maintain relief with an inversion table. But...once the freezing habit was embedded in my mind I couldn't let go of it. Tight, narrow places to walk were the most difficult. DBS in 2011 and again in early 2014 (second side) have blessed me with incredible results. 25 down to 5 meds per day, for example. When I turn one of the stimulators off, now in less than 1 minute I can't move the fingers on one hand at all. So, I went to my programmer at Cleveland Clinic, and then to the University of Toledo Medical Center to see if a programming change would help with the freezing. After 3 different sessions I was beginning to believe that DBS simply couldn't help with a freezing problem. In fact, I read online where in some cases DBS could sooner help induce or support freezing. At that point someone on this forum (PatriotM) helped greatly by mentioning David Zid (author of the Delay the Disease program). A one hour session with David in Columbus worked miracles for me...for 2-3 days. Then the effectiveness faded. I was convinced that David's therapy worked, but I needed more of it, for a longer time period. (Signed up for LSVT, or the BIG therapy. Just finishing my first week, I'm confident this is going to take care of the "embedded memory" problem.) Then, online I read an article that was titled "Adjusting Deep Brain Stimulation Can Ease Swallowing and Freezing of Gait in Parkinson’s". My stimulators had been set a 130 herz (like the article said) since the beginning. I sent the article to my programmer at Cleveland and made an appointment. A couple of days ago she changed the herz settings on both stimulators from 130 to 100. The results are SIMPLY AMAZING.
  3. DBS Surveys

    Hi everyone, posting here on behalf of The Parkinson Alliance. We have survey reports availble on various topics related to Parkinson's disease -- including Exercise, Sleep, Falls, Resilience, Speech, and more. You are welcome to visit www.DBS4PD.org and read our reports. We're also looking for survey participants - our current survey is on Nutrition and can be taken online at www.dbs4pd.org. These surveys are for anyone who has Parkinson's, as well as for anyone who has had DBS - and those who have not had DBS. Please call us if you have any questions at (800) 579-8440.
  4. DBS: One Man's Journey

    Hello, My uncle is suffering from Parkinson's disease and I am trying my best to share his story ( Bringing Buddy back: Teamwork, technology restore a Parkinson’s patient ) that was recently published in The Record, a local newspaper and can be found here along with a video: http://www.northjersey.com/news/bringing-buddy-back-teamwork-technology-restore-a-parkinson-s-patient-video-1.1380917 And here is a follow up story that was published this past weekend: http://www.northjersey.com/news/health-news/friends-raise-cash-for-parkinson-patient-1.1389405 Thank you and God Bless you all!
  5. DBS Programming voltage

    My programmer told me I can go up 0.1v daily till I get to a max of 2.5 on both sides. I have had bilateral dbs at UCSF April 28, 2015 and am allowed to program my voltage. I am on 1.5 v on both sides and am starting to feel stiffer and get random tiny tremors. Will this pass if I continue up or should I stop here. Your opinion?
  6. Dr. Okun, Would you kindly clarify the meaning of this article? Who should be concerned and who should not be concerned? Thanks, Kate Medtronic’s Deep Brain Stimulation Device Cited by FDA for Flaws http://www.businessweek.com/news/2013-05-02/medtronic-s-deep-brain-stimulation-device-cited-by-fda-for-flaws
  7. Read Dr. Okun's article on ultrasound for tremor and maybe one day Parkinson's disease in the New England Journal of Medicine Journal Watch Neurology (full version) or on the blog at Parkinsonsecrets.com
  8. Deep Brain Stimulation

    Hello everyone! I am new to the forums. My name is Joe aka "allshookup". I am looking for some insight about DBS Treatment. Can anyone help me? Basicly nervous as all hell. I have been on all kinds of meds (sinemet, requip, requip xl, comtan, and zelapar) I will never take zelapar again, that one really screwed me up. I am currently 45, was diagnosed at 38. My doctor suggested DBS treatment. Was shocked when first heard about it. Basicly scared about it being a procedure on my brain. That falls up there with back surgery. Never will consider thar either. But after hearung my wife and kids comments about lifestyle in the last few months we depressing. They says I have been just a lump on a log lately. So talking to my wife, I have decided to make a life changing decision and go ahead with DBS treatment. So if anyone could tell me anything please help? If you had DBS treatment? Know someone who had DBS? You are going to have?
  9. Deep Brain Stimulation Therapy

    Hello my name is Carmi, I am the Foundation Manager at The DBS Foundation of South Africa. We are going to climb table mountain on 24 September 2012 to raise awareness for parkinsons and related movement disorders to tell more people about our foundation and how we help people with Parkinsons. Should you, or anyone else be in the position to assist please e-mail me on info@dbsfoundation.org.za you can also visit our website on www.dbsfoundation.org.za to read more about the work we do.
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