Jump to content
helplinedonate

waruna01

Members
  • Content count

    711
  • Joined

  • Last visited

  • Days Won

    7

Everything posted by waruna01

  1. 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?
  2. waruna01

    Is DBS being oversold?

    You should post this thread to DBS forum. It’s helpful for others considering DBS to be careful
  3. 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.
  4. 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
  5. waruna01

    Voice weakness

    Get a second opinion from someone like Sierra Farris if you are not satisfied with DBS results. It’s well worth it
  6. waruna01

    Generic Azilect price

    What is the cheapest generic azilect price for 30 day supply? Has the price come down lately?
  7. waruna01

    insomnia

    I believe Dr okun said in this forum that melatonin can actually make sleep problems worse.
  8. waruna01

    Generic Azilect price

    What is the cheapest price 30 day supply?
  9. waruna01

    insomnia

    Going to sleep and waking up at the same time is a good habit. Caveat, you have to wake up even if you don’t get much sleep at your designated time and follow the same principal for sleeping time. Sleep at the same time whatever other priorities you may have.
  10. waruna01

    Impulsive Disorder/Pathologica Gambling

    Azilect is not an agonist but can induce similar effects. They are all sensitize dopamine levels
  11. waruna01

    Impulsive Disorder/Pathologica Gambling

    Dopamine agonist such requip , azilect can also cause this. Too much dopamine is not good
  12. waruna01

    insomnia

    Some people are born that way and it’s not Parkinson’s. Some people’s brains are passive during day time and very active especially at night. There is lot of mental chatter that happens at night. People decode messages, learn new lessons especially at night from problems encountered during day. It’s a good thing. If you try to treat, you only going to agitate it. Accept it and move on.
  13. waruna01

    Swedish Hospital

    You can also get a good second opinion from this facility if DBS is truly right for you. Sometimes it is not and people jump into DBS out of desperation and end up making things worse. DBS can cause major issues with speech which can take a big toll on your social life as you find itdifficult to communicate https://www.centerformovement.org/sierra-farris/
  14. waruna01

    Swedish Hospital

    Have you been on sinemet? If so, that should be your 1st
  15. waruna01

    Swedish Hospital

    First you should get an expert diagnosis from a neurologist. You can’t self diagnose Parkinson’s. Dr Monique and Sierra are good team. You are in good hands if you use Swedish Denver as Sierra will be with you during surgery. UF Florida Gainesville is also good with Dr Okun and Pam as programmer.
  16. waruna01

    Swedish Hospital

    You may be jumping on DBS bandwagon too soon. Did you get an official Parkinson’s diagnosis? Normally people can go at least 10 years with Parkinson’s meds alone before their quality of life is affected to some extent so they explore DBS as an option. DBS have its own setbacks so it must be done at the right time in order for it to be worth it. If not, it may make things worse. Swedish Medical center in Denver Colander is excellent since they have a good team and an excellent DBS programmer called Sierra Farris. I don’t know about the one in Seattle.
  17. waruna01

    DBS Course

    Both
  18. waruna01

    DBS Course

    For anyone interested https://www.dbscourse.com/
  19. This is hard but if you could use your situation to gain something very positive in life, a new identity, a new you, that you like more than the previous you. Make it a blessing in disguise whatever the situation is whether you truly have Parkinson’s or not. Something very positive in life that would not have happened had the diagnosis was not made.
  20. waruna01

    DBS Programming / Configuration

    Big mistake. If medication, especially levadopa is making him uncomfortable, his DBS settings are way off or to high. Which country he had DBS? In USA, medication is slowly reduced over the years but not completely eliminated. Most patients can expect a 50% reduction of levodopa. Other Parkinson’s medication can be stopped but levadopa is essential to the body it must be taken even after DBS. Any levadopa reduction over 50% after DBS can adversely affect the body. DBS need levadopa to function properly. Read this book entirely, especially the section about medication after DBS. http://www.parkinson.org/sites/default/files/Guide_to_DBS_Stimulation_Therapy.pdf what are his DBS settings? Voltage? Frequency?
  21. waruna01

    DBS Programming / Configuration

    Could be both. Did the reduce his medication post DBS? If so that may be partly to blame. Body needs levadopa even after DBS. If the leads are not placed properly, no amount of programming will give intended results. If the leads are placed properly, then it can take couple years of programming to optimize settings. If he doesn’t improve, go for DBS troubleshooting clinic. Sierra Farris have one in Denver and UF Florida Dr Okuns group have one too. They will do a MRI scan and check for lead placement and reprogram if settings are suboptimal.
  22. waruna01

    Coffee, tea or alcohol?

    Regular alcohol consumption can ruin your gut which is where Pd usually start.. Best to,avoid it if possible
  23. waruna01

    Anxiety

    Excerise, interacting with people is the best remedy. Eat healthy. Avoid heavy meals at night. shankhpushpi and ashwaghanda are two herbs that can help.
  24. waruna01

    I think I have parkinsons

    If your smell is still good, I would not worry about Parkinson’s.
  25. waruna01

    Young onset PD testing

    If your smell is still good, you can smell coffee, banana from a distance, most probably what you have may not be PD given you also didn’t respond well to levodopa. Smell is a good sign to tell your brain neurons are still very healthy. pD symptoms usually appear years after smell is gone
×