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waruna01

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Everything posted by waruna01

  1. waruna01

    Tender Shoulders.

    UF takes foreign patients. I flew my dad there. He lives out of country
  2. waruna01

    Tender Shoulders.

    Programming doctors aren’t the best when it comes to troubleshooting DBS. There’s only couple of DBS troubleshooting clinics in the country. UF Florida DBS center have such a program. They do extensive tests, mri scans to make sure DBS was done properly
  3. waruna01

    Tender Shoulders.

    May be Possible if stimulation parameters are off or electrodes not placed properly. You should go to a DBS troubleshooting clinic like they have at UF Florida. They will make sure your DBS is performing optimally and not causing side effects. Operating the DBS at lowest setting may not be the best choice. You need adequate stimulation not minimal stimulation in order for it to work properly
  4. Is it common DBS patients to experience fatigue after DBS battery replacement surgery?
  5. waruna01

    Battery replacement

    For those of you had DBS battery replaced, at voltage did you do it? Normally ERI indicator appears 2.6 volts. Did you see any noticeable benefits replacing battery before 2.6 volts or before ERI replacement indicator appears?
  6. waruna01

    Battery replacement

    My dad had it replaced early. Probably not a good idea. Would wait for ERI indicator next time. However, be sure to ask your programmer to increase upper limits so you can increase voltage as battery runs low. Be sure to lower the voltage when new battery is inserted. I think when battery runs below 2.8v, it may be a good idea to compensate with a higher voltage. ERI battery replacement indicator appears at 2.6v.
  7. waruna01

    33m. Worried of YOPD

    If it’s not Pd, you are commenting on wrong forum.
  8. waruna01

    33m. Worried of YOPD

    If they said it’s nothing, why don’t you move on? They do this for living so they probably know more than you
  9. waruna01

    33m. Worried of YOPD

    Happy Parkinson’s shopping!!!
  10. waruna01

    What exactly can the DBS do?

    Is there a typical minimum sinemet dose per day post DBS? 800-1000mg per day?
  11. waruna01

    DBS Programming Sessions Per year

    For those of you had DBS, how often do you normally see your programmer in a given year?
  12. waruna01

    DBS Battery after 5 Years

    Is it generally a good idea to replace the DBS battery after 5 years even if the battery is still good left and hasn't reached the ERI yet?
  13. Have you conducted any studies to show that battery doesn't function well after draining below 2.8V? Could this be possible? i.e patient immediately gained a benefit following battery replacement without having settings changed prior to and after replacement?
  14. Does Parkinson’s medications (Sinement) or Clonazepam normally cause liver enzymes to go up? Especially the GGT test?
  15. waruna01

    33m. Worried of YOPD

    You need to be really busy, intensely busy for couple years to break this anxiety to see if it is truly Parkinson’s or not. Go enroll in school or find demanding job, volunteer, or assignment for the next couple of years
  16. waruna01

    33m. Worried of YOPD

    More you keep reading stuff about Parkinson’s in this forum, more you aggravating your Parkinson’s anxiety. Read and do something else to shift your minds attention away from Parkinson’s for a year or so and see if the symptoms remains and if so return back to this forum
  17. waruna01

    33m. Worried of YOPD

    What makes you think all this related to Parkinson’s? This is called tunneled vision. You get fixated with Parkinson’s and now everything seems like Parkinson’s. If you think you can have a vitamin deficiency in this country at age 33, unless you are also malnourished, I don’t know where begin this conversation. You need help with your severe anxiety issues. Seek counseling or something. One way to break the anxiety is to actually believe you have Parkinson’s and move on as normal. You should not worry about things that have no control. You didn’t invite Parkinson’s didn’t you? don’t worry about things you didn’t cause
  18. waruna01

    33m. Worried of YOPD

    Don’t go looking for Parkinson’s. Convince yourself to Wait at least 10 more years before you suspect that you have Parkinson’s. Give your symptoms some time to materialize more. There is absolutely no benefit for an early Parkison diagnosis. So don’t go looking for a diagnosis. I say wait 10 more years before you seek any medical advice. Until then enjoy your life.
  19. waruna01

    33m. Worried of YOPD

    Seriously? This not Parkinson’s. You seem over paranoid. Don’t worry or even suspect you have Parkinson’s until your sense of smell is good. Ie you can smell a banan coffee etc. once you think you have Parkinson’s, your brain will mimic all the Parkinson’s symptoms on web md
  20. waruna01

    DBS Programming / Configuration

    Neurosurgeon is out of the loop after surgery. Programmers do most work after surgery. Most programmers are familiar with Medtronic. They may learn other systems as they become popular. They all follow same concept
  21. waruna01

    deep brain stimulator battery replacement

    Is it an effective strategy to increase the voltage incrementally as battery gets depleted if the patient prefers to get the maximum life out of the battery for financial reasons?
  22. waruna01

    deep brain stimulator battery replacement

    Isn’t it common practice to increase voltage and other parameters to compensate during later stages of the battery?
  23. waruna01

    Is DBS being oversold?

    You should post this thread to DBS forum. It’s helpful for others considering DBS to be careful
  24. waruna01

    Is DBS being oversold?

    Yes. DBS has a commercial element attached to it due to its high tech expensive gadgets. They make a fortune selling these. This is why you got to be very careful about going into DBS. Get a second or even third opinion before doing DBS and even then pause and think twice if you really need two holes drilled in your head and permanently be attached to a machine to the rest of your life. Even the reversible element of this is a marketing gimmick. This surgery cannot be undone. Your scull want grow back and when the leads are removed it will likely create internal bleeding that will have irreversible side effects. Only do DBS when you truly got nothing to lose and if possible, get one side done at a time before doing both side so you can gauge its effects. 1/3 patients only need unilateral DBS on one side and most centers arbitrarily insert two leads on the same surgery.
  25. How good is your smell? Can you smell a banana? Coffee? If your smell is also diminished, I would suspect PD and get a diagnosis. If not, please relax for now until you get more debilitating symptoms
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