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Showing content with the highest reputation on 05/30/2018 in all areas

  1. 1 point
    https://www.michaeljfox.org/mobile/news-detail.php?changing-course-jimmy-choi-story&os_cid=fb-a1b36000006Wh5y listen to Jimmy Choi’s story...he talks about how a doctor told him about how many years he had until he would probably need a wheelchair or other assistance.... LAD
  2. 1 point
    Enjoying this post - I'm 7 years in and doing much better than I imagined when I was diagnosed. I can't do half of what I used to be able to do but it's the other half that I'm pleased about. We're all different but also alike in so many ways.
  3. 1 point
    My best sucess is having something on my mind beside PD.lol I
  4. 1 point
    High frequency over 130 ( I prefer 100 if it keeps tremors under control, 130 is still okay not too high) and high pulse over 60-90 ( prefer 60) width and high voltages are needed if your tremors are not controlled properly but it will also cause tightening of muscles in your throat which can cause speech and swallowing and freezing issues. So it's best to keep everything below above mention limits to avoid side effects. Mono polar settings (-) also very good at keeping tremors under control but can lead to speech and swallowing issues. Bi polar (-+) settings is a good option to try if you have side effects. Low frequency, bi polar settings, low pulse width and low voltages are key to reducing side effects and will also extend your battery life substantially close to 8 + years. Reducing one parameter may need compensating from another. E.g. You can go with a higher voltage if you keep frequncy low under 100. It will even out battery wear since low frequency reduces battery usage) It's about finding the right balance while keep all these parameters low as possible which can extend battery life and reduce side effects .Also, medtronic patient programmer allows changing of frequency. So you can ask your programmer to,give you that option. So you can experiment on your own. Be sure to use your groups in your programmer to try new settings until find the perfect one which may take several years of trial and error programming. Be precistent about programming. Most important thing is to select proper electrodes. So be sure to see an expert programmer like Sierra Farris in Colorado or Pam at UF Florida if you not satisfied with dbs results. I still believe dbs should be the last resort as dbs will likely give you new set of problems to deal with and to,understand it's mechanism is not easy and you will be at mercy of your programmer and neurologist after surgery who will likely blame any post dbs problems to disease progression. You lose you independence after surgery in a way as you have to constantly reach out programmer for more new settings if you are not satisfied with them.You can't undo this surgery. You are stuck with it for life despite what they call as reversible. speech side effects are the most notorious side effects that is very difficult to correct post dbs
  5. 1 point
    My experience is if you have to sacrifice your voice to gain a benefit from dbs as with most dbs patients, think very very carefully if the trade off is worth it. Once you lose your ability to communicate with people properly, it can lead to depression as you will have to hold off your emotions without expressing them to others. Other people will also stop talking with you as they can't understand what you are saying properly. This is the worse part. You will feel isolated as you are living in a bubble.