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waruna01 last won the day on December 10 2016

waruna01 had the most liked content!

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About waruna01

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  1. Voice weakness

    Have them create a Group A with 180, Group B 130, and Group C with 100. Then you can switch at your convenience and see which setting works best or they can patient programmer the option to adjust frequency like amplitude so you can use remaining Groups to get additional new setting combinations.Of course you need to be stay for at least one week on each settings to tell if its good or bad your brain néeds time to adjust for each setting
  2. Voice weakness

    Have you tried staying with 130 for a week or two?
  3. Voice weakness

    Use a caster or coconut oil on head?
  4. Voice weakness

    I beg to,differ. Most people need Sinemet after DBS. It's a very bad idea to drastically cut Sinemet dose after dbs beyond 50% of pre dbs totltal dose. It will make things worse later on.DBS can't replace medication. It works best in unison with meds. Most people like to claim they are med free after dbs and think dbs cured their PD but this will come and bite them in the back later on. You may find few who can pull this off for few years but I would say it's,safe to say over 99% needs Sinemet after dbs. Read page 15 about meds after DBS.
  5. You can also,try Ashwaghnda and mucuna along with magnesium
  6. newly diagnosed outdoor active female

    I,would try to,stay with herbs such as Ashwaghnda and mucuna and delay PD meds as long as possible. Also be sure to exercise daily. Vit d is,good,to
  7. Voice weakness

    Normally people only take plain Sinemet carbidopa/Levadopa post dbs. DBS need Sinemet in order to work properly. They work in unison so you should not discontinue it. Your brain needs dopamine. Dbs can't substitute meds. You are taking several dopamine agonists which is known to induce hullucinations. Your complex cocktail of meds post dbs and might be partly to blame. Discuss with your doc about this. Ask Dr ok un in this forum about your meds post dbs. your dbs settings may need further adjustments
  8. Voice weakness

    I would ask for CT scan to confirm if electrode 1 2 3 are in deed within range of STN. They may be off. Have they tested monopolar settings with just one electrode (e.g. -02)? ideally your team should check high and low theresolds for each 4 electrodes and find the one that provides maximum benefit. Bi polar don't work well for all patients and may end up making things worse. CT scan or post DBS MRI can further validate this and will give you an assurance that your surgery was done right. If your involuntary movements are dbs induced, they should dial back stimulation but normally dbs induced involuntary movements susbside after few months from surgery once your brain gets adapted so don't panic just yet. Also, if you are hullucinating, you may be taking too many meds. You normally only need Sinemet (Levadopa) after dbs and you may want to stop any other dopamine meds such as Requip, azilect etc. sinemet dose also gets 60-70% reduction from post dbs dose per day. Ask dr okun about any meds post dbs if you have any questions
  9. Voice weakness

    Programming is an art. Only a skilled technician with years of experience can do it right. There is no one setting that works for all people.
  10. Voice weakness

    I flew my dad from Asia to Denver to see Sierra and Pam at Florida and it was well worth it. You will likely need about 10 days of stay and will likely cost around $4000-5000. You will likely have to pay out of pocket. I recommend Sierra for complex DBS issues. Pam at Florida is good too and might be closer but they have long waits times for new patients. I recommend you get CT scan along with your initial pre-dbs MRI so they can tell you if they can help you or not. If you can get a post DBS MRI from Europe it's even better than a CT but you need special low 1.5 Tesla MRI machine capable of imaging people with implanted devices. Not sure if you can find one in Europe. They can't do much if leads are suboptimally placed.
  11. Voice weakness

    No. If you are having nightmares and hallucinations it's very likely they have turned ON and electrode that is outside STN target. Each lead have 4 electrodes on each side and usually only 1 or 2 electrodes are well positioned in STN as it is a very small region in brain about the size of a rice grain. All 4 electrodes want fit within STN. Usually good surgeons can at least place 2 electrodes within STN. Same for GPI. Sometimes none are well placed and will likely need revision dbs surgery which should only be done at a expert center that handle revision surgeries. You likely need a MRI scan to check lead location and find out what electrodes are well placed anatomically in STN and usually these are electrodes that should be used for stimulation. If others are used, electric current will spread to other areas of the brain and can lead to depression and hallucinations and other side effects. Bi polar settings can also be used to drag and contain the elctrical current into the proper area of the brain as a last resort but it is still dependent upon how well lead were initially placed. Monopolar (- cathode) provides more benefits in terms of stimulation but can lead to side effects since there is no anode + to contain the current in the brain. Current stream travels from cathode - to anode+. Basically your whole brain acts as anode in monopolar- settings which will spread electrical stimulation into unwanted regions of the brain if leads are not properly placed. I recommend you,go see someone like Sierra Farris in Denver as you may need expert care and it's always worth it to get a second opinion about your dbs settings instead of relying just one programmer. There's a book called patient guide to dbs on Amazon. You can learn a lot about dbs.
  12. Voice weakness

    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
  13. Personality changes?

    It may be depression slowly creeping in. May be he needs to have his Sinemet dose optimized with additional or frequent doses. Use can also try Ashwaghnda as a safe herbal anti-depressant
  14. Early Parkinson

    Ashwaghanda, Magnesium, Vit D, Brahmi are good natural supplements. She can also try mucuna which is essentially natural levedopa before taking precesiption medication later on if that helps. Plus exercise daily
  15. Mucuna Puriens - A Herbal Alternative

    They work together. Both of them were used togeather in ancient ayurweda thousonds of years ago to treat PD. http://www.ayurvedacollege.com/articles/drhalpern/clinical/Parkinson