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Everything posted by waruna01

  1. New guy here - a journey I'd like to avoid

    Read my posts on
  2. Not Diagnosed, However Need Advise

    My dad has Parkinson's. I spent several years with an extreme paranoia that I was getting Parkinson's at a very young age. . I was anxious. I had resting tremors. My right arm was not swinging properly. I had elbow pain. Rigid muscles Knee pain. Depression. Constipation. Insomnia All the classic Parkinson's symptoms that you can think of. I would google all day about Parkinson's and even went to doctors. I would discover a new symptom daily. Finally I had enough and told myself if I am going to get Parkinson's, let it be. (This is key to solving the problem by accepting the problem gracefully) There is nothing I can do about it other than exercise and eat healthy brain food. I convinced my self that I am not going to worry about Parkinson's until my smell is completely gone and stopped paying attention to my body. Note the word completely. Otherwise my brain will make me think that I have diminished smell and will drag me back into the anxiety cycle lol.. Slowly all the symptoms miraculously disappeared within few months and my stress levels went down. I realized it was all my mind play tricks to heighten my anxiety because it got to the point my brain started craving for anxiety like body craves for sugar. So it comes up with something to match the picture. Note, If you take dopamine meds herbal such as mucuna or other otc, it may interfere with natural dopamine production. So wean them off so your body make its own dopamine
  3. Not Diagnosed, However Need Advise

    There is absolutely no benefit in diagnosing PArkinsons early. If you have PArkinsons, it will surface eventually and your body will tell you have problem in your body, NOT YOUR MIND !!!. If your mind is telling you have Parkinson's, then you don't have Parkinson's. People usually find out Parkinson's out of the blue and as a surprise for both parties. They don't guess that they have Parkinson's and get it confirmed by a doctor. That is not how it works. Why not live like a normal normal person until then? What is the point of knowing early? If your smell is still good, which means your brain cells in substantia nigra are still good and firing properly, it's a good enough test to exclude Parkinson's without spending thousands of dollars into expensive tests and specialist doctors. There is absolutely no benefit in getting an early diagnosis. It will only make you face problems with insurance and other life matters with your friends and family. In fact, you shouldn't believe you have Parkinson's even after getting an official diagnosis for several years because it could be wrong. That is the only sure way to know you have Parkinson's by denying you have Parkinson's as long as you can. You can't keep a rubber ball under water. Parkinson's will surface and show its face at the right time if you are bound to get it. Don't runaround looking for Parkinson's. Until then, please enjoy your life. people are falsely diagnosed when they don't have Parkinson's because of paranoia
  4. Not Diagnosed, However Need Advise

    What you need is a very long vacation.
  5. Insomnia

    You need to exhaust your brain with plenty of mental activities in order for it to shutdown. Ashwaghnda can also help,with sleep but don't take it with other sleep aide such as melatonin or klopin
  6. Not Diagnosed, However Need Advise

    If you still have your smell, forgot all this PD nonsense, reading this forum and chasing Stanford doctors, go live your life. Find a passion, help others to occupy time. All this anxiety issues will go away then. More you keep reading stuff in this PD forum, more you will think that you will get PD. I would not come here If I were you. You don't have Parkinson's and will likely never get it. Save your $$$ from going after doctors and donate it for a charity or something
  7. Not Diagnosed, However Need Advise

    Melatonin and other sleeping aide will worsen sleep. What you may need is a long vacation preferably out of country to recapture your normal sleeping rythem. You probably under too much stress from thinking you already have PD and it will worsen sleep. Ashwaghnda is also good for sleep and healthy for brain cells
  8. Not Diagnosed, However Need Advise

    One word of advice for you is you can't diagnose Parkinson's properly when you think you already have Parkinson's. Your body will mimic Parkinson's like symptoms once the thought and fear of Parkinson's enters your mind. Parkinson's is best diagnosed when you don't believe you have Parkinson's and only your doctor think you have Parkinson's. Also, if you still have your sense of smell, I.e you can smell a banana or coffee, I would rule out Parkinson's myself and live your life until your sense of smell is completely gone. This is the easiest way to rule out Parkinson's. Tremors and other PD symptoms usually appear years after losing smell which is one of the prime early indicators of PD. Your prescription meds might also be partly to blame so try to wean them off and try something herbal and natural. There is absolutely no benefit in diagnosing Parkinson's early. It will make your health insurance premiums go up, life insurance rates to go up, change family dynamic wit your spouse,kids, friends and family. So please do your self a favor and stop chasing Parkinson's if you can still smell a banana, coffee, even a little. Worry about Parkinson's after you can't smell anything at all. Do regular exercise. Keep stress levels down. Tripala, shayankapushpi, Ashwaghnda are good herbs to try regardless if if you have PD or not. They are healthy on brain cells. Remember, there is absolutely no benefit in diagnosing Parkinson's early.
  9. Not Diagnosed, However Need Advise

    You might want to try thripala at night to help with digestion. Ashwaghnda might give you energy boost. Very safe herbs to to try.
  10. The Problems with Medical Marijuana

    You can try something safe like Ashwaghnda. Douglas labs makes very potent standardized extract and very good relieving stress and improving mood and it's an ancient herb used to treat pd
  11. Voice weakness

    Purpose of medication I.e Sinemet is not just to control tremor. It has a an overall effect throughout your body including mood, breathing, control of muscles, bladder and other vital functions of the body which dbs can't replicate. Apathy, depression might also slowly creep in to your life without you even knowing it after some time if you discontinue Sinemet. Before being on antidepressants, make sure your sienemet dose is optimized. DBS works best with Sinemet. It's a mistake to completely stop Sinemet but one can and should likely discontinue other PD meds such as requip etc etc and just go with Sinemet only after DBS after consulting with your MD. It will reduce side effects and will simplify your life. If your MD insist on other PD medication after DBS, other than Sinemet, it's likely that your DBS was not performed well or your dbs programming is suboptimal. Sinemet is your friend after DBS. DBS will stop dyskinesia and will allow Sinemet to do its magic.
  12. 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
  13. Voice weakness

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

    Use a caster or coconut oil on head?
  15. 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.
  16. You can also,try Ashwaghnda and mucuna along with magnesium
  17. 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
  18. 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
  19. 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
  20. 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.
  21. 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.
  22. 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.
  23. 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
  24. 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